- Charlie today - February, 2013, to present
For updates from 2011 to 2012, click to download PDF.
10 months after Charlie's death
It has now been ten months since Charlie’s passing. We look back with a sense of awe on a boy who always had the courage to be kind and who had an insatiable desire to connect with others. The approach of Halloween is especially hard for those who adored him.
For nearly a year prior to last year’s Halloween, Charlie talked excitedly and incessantly (!) about the pirate outfit he’d like to wear. Due to his Halloween obsession, we have dozens of plastic skeletons, spiders, zombies, ghosts, fingers – and a squishy eyeball, now coated in fluff, that still looks down on us from the dining room ceiling. Shortly before the 31st October, Charlie’s tumor began to grow back and he grew steadily sicker. Headaches made school hard and so he started to spend more and more time at home.
I have a photograph that is almost too painful to look at of pirate Charlie participating, in spite of his discomfort and disorientation, in the Marble Elementary Halloween parade. He has lost control of his left eye, hardly any hair protrudes from under his pirate hat, and he has the bloated cheeks caused by steroids. He is obviously feeling unwell. But his face is a picture of determination. He had refused to give up on Halloween. To have done so would have meant losing a cherished opportunity. On Halloween kids get to connect over harmless, fun silliness. For Charlie that was the definition of a perfect day. After the parade, he came home to recuperate.
Later that evening he roused himself once more to go trick or treating in a nearby neighborhood with two of his most beloved friends: the twins Annika and Alison. We began by having dinner and socializing with the twins’ parents, Nick and Kierstin. Charlie huddled into my arms in the corner of their sofa and said very little. He was too tired and unwell to do any more. So it must have taken an almost superhuman effort, drawing on the deepest well of exuberance, for him then to get up, hold hands with his dearest friends, and spend an hour going from house to house. Finally, as darkness set in, Charlie said "I ready to go home now, Mum."
We then took him home where he was sick and overcome with fatigue. But he had done it. He had managed to have fun and be normal despite the cruelty of his cancer. He did not know to feel proud of himself: he had too little vanity to exult in his achievement. And nor did he complain: we knew by then that he would do almost anything to hide his suffering from us so as to protect our feelings.
Charlie never ate the candy he’d collected because the tumor was making swallowing too difficult. But he had demonstrated for the hundredth time that he was an astonishingly brave little boy – and not brave in the infantile, macho way that is often encouraged, but in his determination to participate in an event that would provide the joy of connection. Just over a month before he died, Charlie was as life affirming as ever.
It is now over ten months since Charlie passed away. Sometimes pain feels like the only tie we still have with him, because memories always bring greater heartache than joy or pride. If we sometimes forget that he is gone, it is largely because the agony of his loss sustains a strong sense of him being close.
Over time we hope that some of the rawness will recede so that we can recognize that he is both gone and present: gone in the obvious sense but also still present in the knowledge that his short life will go on positively shaping his parents and his wonderful sister, Esther.
June 15th, 2014
Yesterday, on what would have been Charlie’s sixth birthday, we laid Charlie’s ashes to rest in the memorial garden of The Peoples Church in East Lansing. The distance between Charlie’s intense, loving presence and his silent, inconspicuous resting place intensified the pain of loss.
Pastor Andrew read – beautifully – a poem called ‘Kindness’ that Suzanne, mother of one of Charlie’s favourite friends, brought to our attention. It is strikingly fitting (http://www.poets.org/poetsorg/poem/kindness).
Going to Charlie’s grave will not necessarily bring comfort. But it will serve an important role in providing a space where we can nurture and sustain our memories of an adorable and admirable little boy.
May 4, 2014
I do not wish to speak for Esther by talking of her grief. But she said that I could post a poem that she wrote quietly and spontaneously yesterday evening on an old-fashioned typewriter that our neighbor, Kris, gave to her:
Charlie you're funny
Charlie you're sweet
You love every animal
Including a bunny
Above you are now
But down you should be
Crown of friendship
Crown of kindness
I live you so much my dear sweet Charlie You are made of sheer love I love you so much …
February 12, 2014
Since Charlie's death life has not been easy for John, Abigail and Esther. In her Journal, Abigail describes her "addiction". Click the image below to go to Abigail's Journal and read more:
January 11, 2014
t is now over a month since Charlie died. They have been weeks of raw sadness, of painful self-examination driven by a fear of maybe not having been good or brave enough to have always protected him from sadness or pain, and of wanting to do nothing but reminisce in order to be reminded that others also understood Charlie and can therefore know how terrible and unspeakable is his loss. There have been many happy moments, however. Solace in warm friendships made warmer by the brutally cold winter and pleasure in a daughter whose keen mourning reminds us that she too has the deep kindness and loyalty that made Charlie so remarkable a boy.
For the first few days after his passing, out of habit and disbelief, I would keep turning to Charlie’s favorite corner of the sofa expecting to make eye contact, elicit a giggle, or anticipate a need. My mind was never far from the thought of his death but it was still cruelly shocking to find him not where he ought to have been. It was at first unimaginable that so much love, goodness, happiness and understanding, squeezed into so small and vulnerable a body, could now simply not exist, that so much of what gave us daily pride, purpose, and joy had been ripped from us. I found myself not looking at the sofa. If I closed my eyes when looking in its direction I could sustain the faint illusion that all was well and I could sometimes avoid my mind telling me what he ought to have been saying, ‘Come here, Dad, watch TV with me’ or ‘Dad, you’re the best Dad in the whole wide world’ or ‘Dad, when will my fire dragon come?’ or, when he wanted to be jokingly chastised, ‘Dad, you did a toot!’
After a month the feeling of loss is even sharper because we no longer expect to see Charlie on the sofa asking if UPS has delivered his newest plastic dragon or laughing at Scooby Doo and pleading for us to hurry up so that we could share the experience. No part of the brain is so slow on the uptake as to allow one momentarily to forget that he is no more. Now there is just the inescapable knowledge that he is gone and that even our memories, the closest we can ever now come to feeling his presence, will slowly fade, go unreplaced, and perhaps one day come to seem somewhat unreal. Maybe that is why the need to talk about Charlie is more urgent than ever and why I have a desire to continue with updates on this site. It is no longer possible to keep the memory of Charlie alive through updates on his latest adventures or test results. To talk here about the sense of loss he leaves behind feels like a worthy act of homage, perhaps bringing comfort in the same way as mourners used to pay for prayers for the dead to be sung in church.
I also hope that writing on this site will be therapeutic. I have no desire to start a diary in part because coping with grief requires keeping people informed rather than turning more deeply into oneself. At the same time both I and other people do not always know if it is the right moment to talk about the loss of Charlie. The internet may offer a useful compromise between being public, in the sense that anyone can read it, and private, in that readers can find out anonymously how his family is coping without needing to worry about whether they can raise the topic in conversation. Moreover, on this site we have the freedom to express ourselves with a candor not always possible in normal social interactions.
I should repeat, though, that I see bashfulness, especially my own, as a major obstacle to healing. It would be a fine thing to one day achieve the maturity or confidence – and whatever else is required – to reply every so often to a friend’s ‘how are you doing?’ with a ‘Not so well, can I talk about Charlie for a short while?’ instead of offering a forced smile and pseudo-courageous, ‘Oh, not so bad.’ Charlie deserves better than being suppressed by awkwardness.
The Peoples Church on Thursday held a beautiful memorial service for Charlie. We are very grateful for the generosity of many people: The Peoples Church’s Andrew, Drew, Andy and Matt; The Peoples Church’s superb organist, choir, soprano, and ushers; Andrew Pomerville for coming to know us and Charlie so that he could capture in his address Charlie’s ability to bring people together; the staff of Marble School for their appreciation of Charlie; Sabrina and the children of Marble for the wonderful memory tree presented to us; Gorsline Runciman who provided all of their services free of charge; Santa who dropped in specially to give Esther a present; the East Lansing Fire Department who sent several officers to recognize, with a framed certificate, Charlie as an honorary fireman; Penny Swartz for coming out of retirement to speak at the service; Carrie Green for so beautifully reading one of the lessons; colleagues at Lyman Briggs who ensured that every child could dress in pirate gear; the city who helped the event run so smoothly; Pastor Drew who did a superb job of involving kids in the service; Dublin Square for providing a space at no charge at short notice; and all the many family and friends who came to the service and helped us to celebrate the life of a boy deeply deserving of our love and admiration..
It has now been more than two weeks since Charlie’s passing. They have been days of acute emotional rawness, especially on waking when part of the mind, out of habit, expects to hear him say, ‘Wake up, Dad, let’s go downstairs and play’, and towards the end of the day, when there is not enough noise to occupy the attention and sadness is coupled with fatigue. Then we feel ambushed by overwhelming sadness at Charlie’s absence. In such moments one wishes for a period of normalcy in the future at the same time as feeling that it would be an act of betrayal to ever recover from the helpless sadness of the present. Of course, these are the normal thoughts and feelings of the bereaved, the agony of losing something so intensely personal and so entirely unique that there is nothing that can assuage the yearning for its return. But there are analgesics. Our sweet Esther, the kindness and support of family and friends, the necessity of going on. There is also a comforting kind of sadness that comes from reminiscing about Charlie – his acts of kindness, cheekiness, and affection. These not only console us with the recognition that he lived a good if short life but also reassure that our friends will not forget either him or the source of our sadness.
Different people cope with the loss of a deeply loved one in very different ways. For some, silence is preferred. Far more, I suspect, are silent because people are wary of asking out of fear of saying the wrong thing or of triggering painful emotions. I think that Abby and I feel the same way. At some level we are always thinking about Charlie and so talking about him is merely to lift a veil to more honest interaction. It is also our way of continuing in some fashion to break bread with him.
To the same end, please place memories and photos or light a candle at charliewaller.muchloved.com.
Coming downstairs this morning was exquisitely painful. Out of habit or hope or simple denial our eyes are constantly drawn to the corner of the sofa in the living room where Charlie spent so much of his life during radiation treatment in April and May 2011 and during his decline over the last few weeks. That he is no longer there to bestow affection, giggle, or issue demands for crepes with ‘lemon and sugar’ or ‘pickle lollipops’ induces a sense of emptiness akin to having lost a deep part of ourselves. But we have also gained, as so many dear friends have pointed out, by being set an example of the simple virtue of always connecting.
Abby commented earlier today that Charlie’s beauty lay not in the kind of extraordinariness we are accustomed to admiring but in the very basic but easily overlooked gift of being a caring friend.
On Thursday, December 19, at 4pm a memorial service will be held for Charlie at The People's Church in East Lansing. We welcome all to attend. Between 2pm and 4pm pictures of Charlie and his family and friends will also be displayed in an adjoining room.
Charlie leaves behind many young friends and it is important that the service be meaningful to them and that they have an opportunity to remember Charlie without being upset or troubled. To this end we wish to lighten the atmosphere in a way that Charlie himself would have enjoyed. Any child who wishes to dress up in pirate gear is warmly encouraged to do so. We will, however, have to draw the line at singing pirate shanties.
At 12.25 am on December 5th Charlie passed away.
Since around midday he had been largely unconscious. His breathing became increasingly labored and we could see each system slowly close down. He died peacefully and painlessly and leaves an unfillable hole in our lives. We held him on the sofa for some time, before waking Esther so that she could say her goodbyes, and then carried him into the hearse. He lived his last conscious hours as he did the rest of his short existence: summoning friends and family, with weakening hands, to sit with him and to give and receive affection.
Charlie has left a powerful legacy by bringing laughter and friendship to so many. He has enriched so many lives in so very short a time. Soon after Charlie’s diagnosis, as I began to fear terribly what pain he might endure and to question whether it is right to bring into the world new lives that might have to cope with pain and discomfort, Abby insisted that it is still better to have loved and lost. I soon came to agree, partly because of the courage Charlie showed throughout his radiation treatment, the ketogenic diet, routine pokes and foul-tasting medicines, and partly because of the richness and meaningfulness of his interactions with others. I am now more convinced than ever because he has left family and friends of all ages with an unforgettable example of a good life lived to the full by being respectful of others.
Charlie’s condition deteriorated considerably overnight. He can no longer speak or walk, can barely swallow, and is only half-conscious. All we can now do is hold him and ensure that he has sufficient morphine.
The loss of functions seems to have stripped him to his essence: all he wanted this morning was to be held and to hold tightly. Yesterday, perhaps his last day of normal communication, he must have said ‘I love you’ a few hundred times, kissing and holding his family members. It was as if he had a premonition of what he was about to lose and wished to say goodbye.
I feel a little unmanly (childishly perhaps) writing about this, but he showed yesterday a loving beauty of a purity and intensity I have never seen before. It made me realize why I was so moved to have been praised by him. It is because for as long as he could communicate Charlie has found unkindness to be bemusing and disturbing. His judgments are those of an extraordinarily good human being
Charlie’s decline has resumed. On Saturday he could barely walk, he is starting to drag his feet, speaking is becoming more difficult, he is sleeping more and more, and he has just awoken with a severe headache. He continues to understate his symptoms when speaking with us, but his deterioration is increasingly obvious.
On Saturday I walked with him around a book store and realized that if I let go of his hand he would immediately fall over. I think we were both in turmoil: he acting as if nothing was wrong and me buying him everything he laid eyes on! With a resiliency I doubt I could muster he was still playful and kind and generous to his friend with whom he had gone to the cinema.
Yesterday Abby spoke with Charlie about his walking. His response was extraordinarily mature. He agreed that he should have a wheelchair, explained that he felt nervous about it, but stated that he would feel safer with it. The prospect of decorating it with pirate and zombie stickers fully reconciled him to the idea!
There is a downside to praising bravery among the seriously ill in that it can place a heavy burden of expectations on those who are frankly entitled to feel utterly miserable. Even so, my admiration for this little boy grows daily as he tries to protect us and giggles in spite of his pain and anxiety. Yesterday evening as I was putting Charlie to bed he announced, ‘Dad, you’re the best Dad.’ Good empiricist that he is, he then reflected momentarily and added, ‘But I only really know one Dad.’ A moment later, he came to a more satisfying conclusion, ‘But I can’t think how there could be a better Daddy.’
I can’t recall feeling so flattered. I anticipated being charmed and amused and moved by young children, but not flattered by their compliments! But Charlie feels and thinks deeply and he says things with the intention of both making people happy and binding them to him. His deep trust for us gives us hope that he will endure the near future, as his functions decline, without too much fear and anger, and with his love for family and friends intact.
Charlie’s states of body and mind have been bewilderingly changeable over the last ten days. Last week he was his happy, talkative and funny self – a remarkable thing given that he is aware of having to chew his food for a long time before he risks swallowing and knows that he is losing his sense of balance.
He was even able to attend – and enjoy – a large portion of the Art for Charlie auction last Thursday evening (see www.artforcharlie.org for a report on a brilliant show). Then the weekend proved very hard as Charlie became extremely obsessive and we had to be constantly searching for toys to stop him getting very upset. He clearly did not feel well, in spite of morphine, and had to endure a few troubled days.
Monday morning was especially hard as he insisted on gathering up dozens of his favorite toys and putting them in bags so that his future children could play with them. It was a loving obsession but also darkly poignant.
Since Tuesday, however, Charlie has been back onto his usual good form: full of laughs and affection. We simply can’t explain these twists and turns but everyone’s morale is so much higher now that his personality is back.
Despite all that Charlie is going through his spirit is remarkable, and his humor is still evident.
His grandma from England and his aunt Alison have both flown over to be with him.
Charlie is pictured here with Alison showing a video of cousins in England, and grandmother Sue Waller reading a favorite book.
Every day is so different. Yesterday Charlie perked up and roared with laughter for the first time in days when our friend Shannon brought over Harry Hairball, her family’s pet hamster. Further pleasure followed in watching a video of get-well-soon messages from Charlie’s kindergarten friends put together by his fabulous kindergarten teachers and with the arrival of Charlie’s godmother Carrie.
This morning began at a painfully early 4am but he remains in very good spirits, joking in a way we never expected to see again on Sunday. I have been watching in admiration at Charlie and Abby talking and laughing with complete mutual understanding and trust. Charlie cannot sit or walk unsupported but emotionally he has rallied. We do not know why this has happened, but gratefully accept it.
As Charlie declines and becomes the focus of constant attention, it is inevitable that his sister Esther feels relatively left out. This is why it was so special that the East Lansing mayor, Diane Goddeeris, had the inspired idea of allowing Esther to serve yesterday as honorary mayor for an evening, taking charge of the early stages of the city hall meeting. She came back home brimming with pride!
(Click the picture to see council meeting video)
Listen to John Waller on NPR
Charlie is more alert and communicative than he was over the weekend. Maybe a slightly higher dose of steroid has allowed some of his cerebro-spinal fluid to drain away, relieving some of the pressure. We are also becoming more adept at anticipating which of nine different medications he needs at different points of the day and night.
Unfortunately several of his primary functions are declining at a rapid rate. He can now only swallow with difficulty (he chews a mouthful for some minutes before risking a swallow). He cannot sit without falling to the side. His voice is becoming harder to decipher, and he is becoming more irritable due to both steroids and his clear awareness of what is happening to him.
Fortunately he has such a strong personality that he is often able to be his old self. But it is now a very limited and sometimes painful life
November 3 - approaching the end
Charlie’s decline is happening more swiftly than we ever imagined. Yesterday he could play and laugh even though he slept much of the time and complained of a bad headache. Today his brain is forcing him to sleep to avoid the constant pain of the fluid build-up. He returns to us for brief glimpses but for the most part consciousness is too painful.
If we dose him with morphine and hydrocodone to take away most of the pain they have the same effect of making him sleep. We would rather give him medicines to lessen the pain but at present he rarely wakes up long enough to swallow them.
We always knew this was coming but are bewildered by the speed of it: only Thursday night he was rampaging the neighborhood for Halloween candy. The knowledge that he will not be with us for long has hit hard. It is a terrible thing to imagine a world without his easy laughter and love.
November 2 - Progression of the tumor
We will not get the full radiology report till next week but the change in Charlie’s symptoms has been terribly dramatic. His headaches are hard to control and causing a lot of pain. He is vomiting at least once a day, his appetite is gone, and he is growing tired more quickly.
He is currently fast asleep on a sofa after a difficult night. It would seem that the tumor is now pressing on new areas and that the fluid buildup in his brain has increased. We have new medications to lessen the pain and to reduce vomiting. Unfortunately he tends to vomit soon after taking them. Hopefully we will be able to find ways of overcoming this problem in the next few days.
This morning Charlie lay in bed, his head hurting and having just vomited, and kindness just poured from him. He talked of adults and children he loves and asked if they could be part of his family. He came up with ideas about encouraging other children to be nicer to one another. With loving trust he said that it would be all right because the doctors really want to help him.
We know that things are now bad and are going to get worse because he tells us that he is in pain. A few weeks ago he swore someone he loves to secrecy about not being able to see out of his right eye. He didn’t want us to know, he explained, "because Mum and Dad worry."
What would Charlie have become? I think he has a good idea. When asked for a school project he answered “A zookeeper, a doctor and a daddy.”
Charlie is just coming round from an MRI - feasting on candy eyeballs and other loot from yesterday's trick or treating when he dressed as a zombie pirate and plundered the neighborhood.
Charlie's symptoms have noticeably increased over the last 2-3 weeks. His headaches are less easily controlled with normal painkillers, he is experiencing more of them, and yesterday he began to vomit. Today's MRI will probably show further fluid build up and tumor growth.
We feel now that we are entering the frightening, long drawn-out, closing phases of his tumor. Depending on what the scan shows we will either continue with this experimental but highly uncertain chemotherapy or switch to re-irradiation that carries more risks and discomfort but has a higher known likelihood of shrinking the tumor one last time.
Charlie was struggling towards the end of trick or treating yesterday evening, as his headache and nausea worsened, but spent a happy hour and a half with his utterly delightful kindergarten friends, Anika and Alison. He is currently happily attacking us with two plastic dragons we just bought him.
Charlie is a beautiful child. Two days ago, for the first time that I can recall, he complained about having cancer.
It was a fleeting complaint, "Dad, I wish I didn’t have cancer - when will it get better?"
The moment then passed. And yet he has endured so much in the last few years in addition to recently losing all vision in his right eye and his hair falling out due to chemotherapy. Nothing has diminished his warm awareness of the feelings of others that he shows at all times except when attacking us with a pirate grimace and a plastic sword!
If we are fortunate in any respect with Charlie’s illness, it is that it happened to a boy who is so quick with affection, kindness and laughter that he has won the love and support of so many people. This will help him bear the next few months of decline
We have not received the official read of Charlie’s MRI but the preliminary analysis suggests the following:
(a) the tumor has grown further, pushing back towards the cerebellum in the rear part for the brain;
(b) but probably not at the same rate as between May and August; and
(c) that there is an area of concern in another section of the tumor that might be dead tissue or an area of growth.
This is not the worst news we could have received. A growth of about 2mm is significant but does not suggest that we will lose Charlie in the coming weeks. One possibility is that the experimental chemotherapy Charlie is taking has slowed down the tumor growth.
While there is no way of knowing if this is true, there is sufficient reason to continue with the trial for the time being. It is having the effect of causing Charlie’s hair to fall out, but he is not too disturbed by this at present.
October 7 (afternoon)
Knowing how much to tell Charlie is always difficult and is very much on the mind when on the way for an MRI. There is no point in needlessly upsetting him or risking talking beyond the level of his comprehension. But there is a possibility that he can be prepared to some extent for the future by being told about his cancer. Talking about it also gives him the words and the sense of freedom to ask us questions that are troubling him.
A couple of weeks ago Charlie took great pride in talking about his cancer to the kindergarten classrooms at his school, wisely commenting to us that if other children know why his eyes are crossed they might not notice it any more. Slowly his disease has become a part of his identity without it causing serious upset.
This is down to his courage and to Abby's genius. She has an amazing understating as to how much to keep him informed. He now knows everything he can grasp except for the terminal nature of his illness. A few moments ago, as we drive towards Grand Rapids, he saw a bump on his teddy bear, likened it to his tumor, and decided to call his bear 'cancer'.
I think it attests to what a profoundly important job Abby has done in making him feel comfortable about the topic. It takes bravery and courage to do that. It also takes a special boy.
Charlie will have an MRI in Grand Rapids today to see whether the experimental drug he is taking has had any effect.
If the tumor has grown we will discuss whether or not to continue with the trial and whether he will need to go on to higher dose steroids.
The steroids are currently making Charlie quite wild, if happily so, for long periods of the day. But they are keeping his headaches to a minimum. His MRI today is not till midday so he has to get through the morning without food and fluids. He is beautifully tolerant of these kinds of hardships.
He is currently waiting patiently on the sofa with a pet worm which is being put in mortal danger by the strength of his affection.
We are currently staying at a remarkable resort for children in Kissimmee, Florida, called Give Kids the World.
It was created by the Belgian Henri Landwirth who spent five years in the Auschwitz and Matthausen concentration camps before being liberated and emigrating to the US. It is a fantasy land for kids just a few miles from the Disney and Universal parks. Charlie and Esther have had at least as much fun here as at the big parks. Everything is set up with the objective of delighting children: ice cream for breakfast, donuts delivered to the house in a golf cart every morning, tuck-ins from animal characters, shows, makeup salons, putting golf, miniature railways, a splash pad, a large, heated pool, presents delivered to the house every day … and hundreds of enormously friendly volunteers.
It's a seventy-acre exhibition of the most wonderful whimsy: Charlie and Esther especially adore feeding scraps of paper to the paper-eating robotic clown and dropping coins down a magic well that usually burps in response. The fact that the jacuzzi bath is in the kids' room just about sums it up! Perhaps the best thing about the venue for us is that we have a retreat from the hectic theme parks which are sometimes difficult for Charlie now that he is back on to steroids. Today we're spending the day by the pool and then, later in the afternoon, going on an airboat to spot alligators.
Both Believe in Miracles and Give Kids the World are reminders of how tragedy can be motivating.
On that note, although we tend to keep Art for Charlie separate from Friends of Charlie, perhaps I can make a quick plug for the former. We are receiving some really beautiful artwork donations for the November 14 show in East Lansing and Rebecca Roberts and her team is doing a brilliant job in eliciting non-art donations. Please put the date in your planners!
This month Charlie started kindergarten, an event that we never allowed ourselves to dream of back in the Spring of 2013. He seems to be doing very well. The school social worker and his teacher are wonderfully supportive and Esther’s teacher allows her to visit Charlie a couple of times every day. He is also bonding well with some of the girls in his class.
His first day was difficult because another child made fun of his eyes which are now significantly crossed. A couple of children immediately rallied to his defense and he was not overly disturbed.
But Charlie is conscious of his appearance. He announced yesterday evening that he would start a ‘Cancer Club’ at school for all children with cancer so that they could look after one another!
Prompted by Charlie’s wish that other children know why his eyes are abnormal, tomorrow Abby will talk to the children in Charlie’s year about his cancer and why it is going to mean that he sometimes has to miss school to see a doctor.
All of this pales alongside the excitement of both kids about going to Disney World.
A wonderful Michigan foundation, Believe in Miracles, is sponsoring our family to go to Disney World on Saturday for six days.
Leaving Saturday . . . the kids are counting down the days over and over again.
Believe in Miracles
Yesterday we received the news that we have been expecting but dreading, and for which we were still unprepared. Charlie's tumor is growing back.
We were especially alarmed to hear that it has grown a full half a centimeter. There's no way of predicting how fast it will now grow, but it would appear that it is not coming back as slowly as we were expecting. Charlie started a clinical trial yesterday, though we do not have high expectations of it. We will also start him on low dose steroids in a couple of days in the hope that this will relieve some of the fluid blockage that is causing him headaches and disturbing his sleep.
He is currently still very happy and we will do all we can to enhance these next few months. Today is a pirate festival in the lakeside town of Grand Haven and so we're taking him there as a surprise.
Charlie has his next MRI on Friday 9 August in Grand Rapids. We approach it with great trepidation as it is hard to explain his increase in symptoms except as the result of tumor progression. He is experiencing neck pain and headaches. Several times Abigail and I have also noticed a very slight foot drag. In addition, his sleeping has deteriorated and he is having the short but intense tantrums of pre-diagnosis days.
There is a possibility that what could be a cyst in his upper spine, noticed on his last MRI, is causing a fluid backup and his symptoms. We’ll probably know one way or the other next Friday when they scan his brain and upper spine. Either way Charlie will be enrolled on a trial known to target a particular pathway identified in roughly a third of DIPGs. No-one knows if it can cross the blood-brain barrier in sufficient quantities to affect the tumor even if a child does have the targeted mutation. But the chemotherapy is of low toxicity and so is worth a try.
If (or more probably when) this drug fails or stops working, we are likely to opt for another round of radiation.
Today we return from a four night stay with our wonderful friends, Carrie, Charlie, Madeline and Sylvia Green, on the shore of Lake Michigan in Sheboygan, Wisconsin.
Watching the four children play and to see Charlie connect with Carrie and Charlie, his godparents, has been a pure joy. Charlie grows in empathy all the time to the extent that Abby and I often look at one another in disbelief at the compassion of his words.
Our distress, in spite of our attempts to mask it, is obviously so painful to him that he does not always tell us when he is experiencing pain. When we suspect he has a head-ache we ask him if anything hurts. He usually says no. Then we offer Tylenol and he accepts and clearly starts to feel better. In the last week and a half, however, he is experiencing more discomfort and is more inclined to tell us that his head or neck hurts. He has not complained of pain so consistently since before diagnosis and we now fear the worst. He is also holding his neck in odd positions as if to relieve pressure.
He is due to have an MRI on August 7 and then we may find out if progression is underway. For the present, Charlie remains beautifully tender and happy.
The family arrives back in East Lansing, Michigan - home from an unforgettable holiday.
We had a simply wonderful time in England and Wales. It began with an upgrade to First Class on the flight from Boston to London (thanks to Karen Essa and her colleagues at Delta). Esther could barely contain her excitement and both children arrived rested and in high spirits. We then spent several days staying in my sister’s dreamily beautiful cottage in the lovely Cotswolds village of Great Tew. There we met up with several old and dear friends (Jason, Zoe and Kitty, Ben and family), the children adored every minute with their grandparents. Charlie had an excellent birthday party with Waller family and friends, and we felt rapidly and happily at home in this very special village which has perhaps the finest parish church and the finest pub in England. We’re especially grateful to Richard and Mary for their kindness and hospitality (and for providing Charlie’s magnificent birthday cake).
We then took a train to the far west coast of Wales to stay for three quite magical days, with Emma and her delightful son Samuel, in a medieval tower close to the extraordinary Caernarfon Castle. Then back to Great Tew, a fun day and night in Oxford with Abby’s sister and family (Darian, Inigo and Oriana), and on to two nights in Eastbourne where we spent our days with my remarkable grandmother, who had turned 90 a few days before. Finally, back to Oxford, where we had a fantastic weekend with Alison, Darian, Inigo and Oriana, and Emma, Simon and Samuel, as well as Neil Thomason, a friend from Melbourne days who, by lucky chance, was also in England. Apologies to those friends we could not see: we plan to be back within the year.
On the final day we met up with my sister Jane, her husband Jason, and their boys, Theodore, James and Louis. We spent a glorious few hours punting up and down the Cherwell. It is due to the generosity of Jane and Jason that this trip was possible. Thank you so much again.
The children have returned happily to their East Lansing life. For photos, see: "Scrapbook".
Charlie still in England visits Eastbourne and meets, for the first time, his great grandmother on the paternal side.
June 15 -
Charlie's 5th Birthday!!
For any child it is an occasion to celebrate. For Charlie achieving this birthday is a miracle the family could hardly have dared to hope for.
Charlie celebrated his birthday in a tower of Carnaerfon, a 13th century castle in North Wales built by Edward II to subdue the Welsh (a project that has proved only moderately successful).
As can be seen in the photo, Charlie's spirits are as high as ever and in full flight of fantasy.
Very good news today. Charlie's tumor is stable: there is no sign of growth. This is quite remarkable given the prognosis he received more than two years ago.
It seems that there is a small subset of pontine gliomas that are less aggressive and that respond more positively to radiation. The latest result does not change the long term outlook, but it does allow us to enjoy more happy months - a year, maybe? - in his delightful company.
Today we booked four tickets to England where we will stay for much of June, in a beautiful cottage in the Cotswolds and, for three nights, the turret of a medieval castle in North Wales!
Thank you to Jane and Jason Zibarras (John's sister and brother-in-law) for their wonderful generosity.
The photo on the right shows Charlie and Esther before school today - Charlie is spending the week, under the very protective eye of his sister, at kindergarten to ease what we hope will be a transition to normal school in the Fall.
There is a beauty to Charlie that we find hard to describe but have to try to convey. It is important to us that there be a memory, as widely shared as possible, of a special little boy who will never be far from our minds.
On Sunday he came downstairs in his mother’s arms saying, “It’s the best day ever! Happy Mother’s Day, Mum! You don’t have to do any cleaning. We’ll do it
It wasn’t so much the words but the sincere, excited, exuberant love with which they were expressed. There was no jealousy or agenda. Charlie was excited because it was to be a day to celebrate what he does best: lavishing affection on others and receiving it in return.
Deep in Charlie’s nature lies an urge to nurture those who adore him. Maybe he remembers, however dimly, a time when he was entirely dependent on the love and reassurance of his parents and extended family. He will hug, plaster with kisses, and stroke ones face with utter tenderness, exulting in the experience of having a pure connection with another person. Not that Charlie’s always gentle: his zest for life extends to thumping his sister. But even his naughtiness is aimed at receiving the knowing, amused grin of a parent or the giggles of a sister.
We are currently in Maryland, staying with the Graham-Yoolls, where Charlie is always happy. Tomorrow he will have an MRI.
has now been two years since Charlie’s diagnosis, two years of pouring out love, receiving it return, and fearing the future because few cancers kill as cruelly as this one. Knowing what is to come has taken its toll on everyone, with the happy exception of Charlie himself who becomes happier and more loving each passing day.
Sometimes we think that he has some intuition about what his future holds. Maybe it’s his cheerful, uncomplaining acceptance of scans and medicines that hints to us that he grasps the seriousness of his situation. But at times he also talks about the future.
‘What will my kids be like, Dad?’ he asked a few days ago.
‘I don’t want to grow up, Mum’, he said this morning, explaining that he feared getting older and no longer being with us all the time.
It’s hard responding to such questions without conveying the deep sadness that has to be concealed from him. We are fortunate, though, in having such loving family and friends and a little boy whose kindness and capacity for innocent mischief make him so easy to love and befriend.
Charlie is in such good spirits that the decision to hold off on treatment until his condition becomes intolerable seems sensible.
Meanwhile John and Abigail were interviewed by Tony Conley of WILNS radio this morning -
click to listen. It's a tough family situation to discuss and both hold up well.
Also they were interviewed again by Lansing State Journal -
Yesterday John and Abigail reported better news from Chicago. Radiation oncologists at the CDH Proton Center confirm that they are willing to treat Charlie with proton beam re-radiation. Treatment could commence almost right away, though the preference, if symptoms do not become acute, is to wait until May this year to allow more time for previously radiated cells to recover more, thus reducing risk of necrosis. The news was a relief to the family, coming the day after receiving the devastating report that MGH in Boston had rejected Charlie's case.
However subsequently MGH clarified the basis of their decision following a risk/benefit analysis of conventional radiation versus proton beam, concluding that proton treatment involves greater risk without demonstrable gain in benefit.
So a final decision still needs to be made as to whether Charlie receives proton beam plus conventional radiation or just conventional radiation. Either way, it is very likely that he will have a second round of radiation, involving much less radiation than the first time.
It's Thursday -- and still no news from Boston on whether they will accept Charlie for particle beam treatment.
Yesterday the tumor board at Massachusetts General Hospital met and discussed giving proton beam to Charlie. We have yet to hear what they decided - or if they need more time to consider. Hopefully we'll know by the end of today.
We're now desperate for them to say that they will do it, and that the risks of collateral damage and significant brain swelling will be low.
Charlie's scans will be read by the radiation oncologists at a major hospital with proton beam facilities on Wednesday. By the evening we should know whether this is an option from their point view. If it is, then we have to make hard medical and financial decisions. As ever it is a matter of weighing up probabilities where we are really in the realm of the unknown. Charlie is happier and more lovable than ever.
For more information:http://www.massgeneral.org/radiationoncology/BurrProtonCenter.aspx
On Friday evening we received more information from Charlie’s oncologist. It seems that the area of activity in the tumor is significantly more active that on previous scans. This does not mean for certain that progression is around the corner, but we have to start assuming that it is. Contact has been made with a couple of hospitals that have proton beam facilities. In all likelihood we will take this option if it is available. Given the quietness of the rest of the tumor, it could conceivably buy us some more time with Charlie.
Yesterday we returned from the NIH. The scan (not for the first time) is ambiguous. The good news is that there is no sign of growth. The hard-to-know-what-to-think news is that there is an area of the tumor that shows lots of metabolic activity. A nutrient called choline is present at a high level in this section and choline is often associated with cell growth because it is essential for the formation of cell membranes. This might sound bad but Charlie has had a raised choline level before without subsequent tumor growth. We are now waiting to find out from Charlie's neuro-oncologist, Kathy Warren, if the choline levels have increased over the past few scans. If they have, then it obviously makes more sense to think that we are looking at a tumor gearing up to start growing again. I'll post an update as soon as we hear.
Meanwhile some unambiguously bad news is that the venture capital firm that owns the patent for Xerecept, a compound that might reduce cerebral swelling and lower a child's need for the terrible (if effective) steroid dexamethasone, is not granting compassionate use. This means that Charlie will only have a chance to benefit from this drug if he is part of a clinical trial, or if the drug is shown to work and he survives the several years it takes to go from phase III trial to FDA approval.
Charlie at NIH, Washington, DC. Results of the February 20 MRI scan are mixed and the report will follow shortly.
February 19, 2013
Today the Waller family flies to Washington, DC, for Charlie's MRI scan at NIH tomorrow, February 20. This will relieve or confirm the deep concern that some recent symptoms - double vision and muscular control -- could be indicative of the long expected, and feared, return of progression of the tumor.
Results will be posted when available.