Press on the link above to view the interview!
Friday, 23 May 2014
Link to the calendar tv feature
http://www.itv.com/news/calendar/update/2014-05-21/harrys-book-is-runaway-success/
Wednesday, 21 May 2014
Calendar tv!
Tune into calendar tv tonight, 6 pm on ITV to see a short piece featuring Harry's book and Nuzzlet's farm!
Above is a link to buy the book!
Thursday, 15 May 2014
How are we?
Well, it's a difficult question to answer, because of course we are not fine, how can we be, it's only just over a month since Harry died, though it feels much longer.
We are doing our best to get on with life and create new routines and not sink into a deep depression. We have a massive piece of our lives missing. Our lives revolved around Harry's illness. Every plan we made depended on how well Harry would be as to whether we would achieve the plan. Towards the end, we made no plans, our lives became so small that only trips out for an hour at a time were possible. Our lives were mapped around Harry's care needs and the various care staff that came into our house each day. Paul went back to work in January and so I was Harry's main carer and I did what I could for Callum too.
Now Harry is no longer here, I guess the world is our oyster. We went to Northumberland on holiday the last week in April. The weather was mixed and when we were in the caravan, just the 3 of us, Callum's playmate was so obviously missing. It was good to get away and returning home feels a little more manageable being in our home surroundings, but the grief comes in waves.
We have lost our fantasy, our family of 4. We planned our family carefully, not having Harry until we were financially secure enough to do so, then waiting 15 months to conceive him, then deciding to have another child, with the aim to have a 2-3 year age gap, so that the children would grow up close in age and be good playmates. We achieved this aim, but sadly we couldn't keep hold of it.
Having something you so dearly wanted, then having fought to keep it, but finally having cancer take it, is so truly devastating.
We have to grieve the fantasy, the loss of what we set out to achieve and had for a short while.
We have to develop new routines and ways of doing things.
We are not ready to go forth and explore the world yet. We are not ready to have that expensive dream of a holiday, because currently our hearts are not healed enough to go forth and leap that far.
It's a case of baby steps and small goals.
Some times we are fine, then a trigger point will cause a wave of grief and depending on the social situation, depends on whether we hold our breath until the wave passes or if on our own, we may embrace the wave and have a few tears or a few moments of deep sadness.
I collected Harry's things from school last Friday. These included his school work that he did. When I looked at them properly at home I felt such huge sadness and loss, that there will be no more work, no more pictures, no more handwriting. Harry's reading progress book had the last book Harry read at school recorded and the title was 'fly high'. Very poignant I thought. The book was about a plane flying high and Harry really liked reading this book.
Having spent so much time with Harry in the last few weeks of his life, Callum had little attention from us. It has been good to get out and about with Callum. To meet friends up and go for walks on The Chevin. To get Callum out in the great outdoors has been fabulous. It highlights how small and limited our lives had become over recent months or even much of the last 2 1/2 years. We did achieve many adventures last year, but Harry's stamina was always an issue, we couldn't go for long walks on the chevin or long cycle rides. His health was very unpredictable and if he over did it one day, he would tire the next. We made the most of our time with Harry and I think that has brought me peace. We accepted that Neuroblastoma is one big beast in the world of cancer. Harry had already had second line chemotherapy in February 2012, when the initial chemotherapy did not clear his bone marrow. This TVD chemotherapy had harsh side effects, fortunately only 2 rounds were needed to clear Harry's bone marrow and enable him to return to the original protocol pathway. However, when Harry relapsed, we knew that his platelets were very low, around 40 and so he was not in a good place to recieve further chemotherapy. Any further treatment at that time would have caused him huge problems. We already had witnessed the side effects that could occur, for our family unit and for Harry, further treatment just wasn't the right pathway to follow and so we took life by the scruff of its neck and went forth and achieved so many adventures. The help from those on the way that fundraised for us to keep having trips, was and always will be remembered and treasured!
As you all know Harry lived just over a year post relapse.
We were told in June 2012 that he wouldn't make the summer, but he did and he made it through winter and saw the commencement of spring too.
Life was very unpredictable at times and managing his medication and trying to get that right was a project in itself. I was always keen to decrease Harry's medication when we could and pushed for this to happen, something that was a rare sight. Most cases have only seen increases in medication, not decreases and at times I got concerned that Harry suffered withdrawal side effects, another issue with too little information. This was also because Harry ended up on buprenorphine patches and not fentanyl and these haven't so widely been used in children and certainly not to the strengths Harry reached.
Towards the end, Harry ended up on such massive doses of drugs, it was a wonder he continued to function to the degree he did. I remember thinking that this increase this time will surely knock him out, but it didn't, until he commenced on Medazalam to calm him, the Friday before he died. Following the commencement of this drug, we never did have another proper conversation with Harry. I knew that when he started it, that this was the big boys drug and it would make him drowsy. However, I knew he he had reached the point of being too agitated due to the pain. Knowing him best and inconjunction with his McMillan nurse, whom travelled the 2 1/2 year journey with us, decisions had to be made re keeping Harry comfortable. The hardest decisions ever and decisions no parent should ever have to make.
Now our chapter of our life with Harry is complete. We are now a family of 3 and we need to get used to it. We will never forget Harry, he lives on in our hearts and remains apart of conversation at present. I wonder how I will feel in a year or two, when Harry's friends are older and Harry remains forever 6. I am acutely aware that the pathway of grief is a long and winding one too. As I may feel ok for a while, the passage of time may ease the pain, but at times it may not, as the years become greater for not having Harry with us than it did. The fear of forgetting what he sounded like, his phrases, the funny things he did. We have photos and DVDs to remind us I know, but even now I sometimes wonder if I dreamt that we had Harry.
Having attended an assembly dedicated to remembering Harry, at The Whartons school yesterday, I realise how much a part of the school community he was. There were many memories shared. Lovely memories about his positive attitude to life, his creativity, being a friend and being a part of his adventures, such as go-karting and diggerland. Although, it was very emotional, it was also lovely to know so many pupils respected him, had time for him and miss him. Even when he was in his wheelchair, some of the pupils shared stories about him decorating it, or showing off how fast he could go in it. Harry was initially frightened that the other children would laugh at him, when he was on his walking frame or in his wheelchair, but I believe his spirit shone through and respect is what he achieved. I hope when children see others in wheelchairs, they remember Harry and know that the chair is not a barrier to knowing the person sat in it.
Callum is now 4 1/2. I do look back and remember Harry at this age (March 2012). He was just finishing his TVD chemo, then he had his stem cells harvested, then he had a nine hour operation to remove his tumour then on May 16 th 2012 he entered LGI to commence high dose chemo and to have a stem cell rescue, using his own stem cells. This time 2 years ago, we had our final night all under one roof for 6 weeks. We knew what we were consenting Harry to endure could have killed him, it has killed others. We knew if he hadn't had the treatment, the cancer would have grown again and killed him. Having this definite knowledge made signing the consent form the easy part. Watching him suffer the severe side effects wasn't.
Seeing Callum at this age, I am beginning to realise how much Harry missed out on. We have accepted Callum's place at The Whartons School and have also signed Callum up to some induction sessions at school, sessions Harry was not able to attend. We are preparing Callum to start school in September and we can get excited about it. Callum has already expressed that he doesn't need any new school uniform as he can wear Harry's, which is lovely. I know the excitement around Harry starting school was taken away from us, due to his treatment and the side effects of radiotherapy, which meant he started school late and intermittently, due to further treatment, his stamina being low, the need for frequent transfusions etc, etc.
What was evident from the memories shared at the school assembly yesterday was how Harry went to school, despite being poorly, enjoyed it and frequently had a smile on his face. I have to say, we pushed him into school at times, knowing he would enjoy it once there, we needed the break from each other and as I know myself, mixing with others can be uplifting and lighten our mood when down. Isolating ourselves can be detrimental.
I continue to push myself into social situations, knowing the first one since Harry died is always going to be the most awkward. People don't want to NOT acknowledge our loss, but don't know what to say either. We too, are not always sure what to say or how to move on socially, but we are grateful to have you all here, to continue with us on this journey of life. I am truly grateful for Callum too, as my status as a mummy remains. He makes us remain sociable and he keeps us linked into our social circle being friends with the siblings of many of Harry's friends. I remain on unpaid leave for the present time, giving myself space to come to terms with our new life, particularly whilst Callum is at nursey. However, I am hoping to return to work in July. I have learnt so much about life, loss and bereavement, I know I am very much richer for knowing Harry, although my heart hurts and I know the knowledge and life experience I have gained has been so much more than any course could ever provide. The next goal is to keep my registration as a social worker, due for renewal in November. I hope I can achieve this smoothly, but if not, fighting the system I can do!
Wednesday, 14 May 2014
Our recent visit to Nuzzlet's farm
Thursday, 24 April 2014
Post traumatic stress disorder - an interesting article in relation to cancer
THE BLOG
Childhood Cancer and Post-Traumatic Stress Disorder
"Your child has cancer." These are words no parent ever wants to hear.
"You have cancer," is often a meaningless sentence to a child, but the fear and horror the child sees in his parents' faces and hears in their voices is unmistakable.
For parent and child, a cancer diagnosis is a mental shock. And the physical shocks that follow that diagnosis- invasive treatments, surgeries, radiation and chemotherapy are also difficult to bear, also potentially traumatising.
Cancer is a life threatening disease. And the threat to life- including the treatments to save life-can be traumatising to those who witness their child or sibling going through cancer treatment. Death of course makes it even harder. Treatment is also potentially traumatising to the child with cancer, potentially leaving psychic scars lasting well after a hopeful recovery.
Facing a series of repeated life threatening events puts each of this group (parents, siblings, and the childhood cancer patient as well) at risk for developing post-traumatic stress disorder (PTSD). PTSD is a disorder that is commonly associated with exposure to combat, natural disasters, or bodily assault.
PTSD in those who experience cancer, usually presents in response to feeling one's life or one's child/or sibling's life is under serious and/or repeated threat.
The symptoms of PTSD include:
• Re-experiencing the cancer treatment in nightmares, intrusive thoughts or flashbacks--scenes that are often reported to be much like full sensory movies playing unbidden in one's mind. • Avoiding places, people and reminders of the cancer experience including shutting down sharing with others what one has been through. • Negative changes in beliefs and feelings including feelings of guilt, fear, shame or losing interest in previously enjoyed activities and feeling alienated from others. • Bodily hyper-arousal experienced as agitation, inability to fall or stay asleep, being easily startled, irritable, having difficulty concentrating and so on.
To qualify for a diagnosis of PTSD these symptoms must last for longer than a month and must significantly interfere with life functioning in relationships, work, education or other important areas of life.
In some cases delayed responses occur and in others only some of the features of PTSD occur. Or other related disorders arise such as anxiety disorder or panic, phobias or depression. Those who are suffer from PTSD are also at increased risk for substance abuse--as alcohol or drug abuse arises out of attempts to self medicate flashbacks and nightmares away.
Children who have PTSD often manifest their symptoms in ways that are unique to their developmental stage. For instance traumatized children may revert to wanting to sleep with their parents or go backwards on skills they previously mastered. They also often display a need to play and replay the cancer experience in attempts to master it. Or hyper-arousal may come across as aggression or misbehavior, especially in boys. Girls often go dissociative following a traumatic event--meaning their minds compartmentalize the event. They may say "everything is fine" and show no emotion but if someone where to measure their pulse when cancer is being discussed, they would see that their bodies are showing agitation. More loving touch, sleeping near to parents, and loving interactions with pets can help both adults and children to self soothe in the face of hyperarousal and posttraumatic re-experiencing.
When it comes to trauma children also often take their cues from their protectors. Parents who stay calm and who modulate their emotions well model to their children about how to cry over sad news, stay strong in the face of fear and self comfort, as well as seek comfort for overwhelming emotions. Parents who get hysterical or who shut down emotionally provide little support for children who have to navigate their own emotions and need help doing so.
The risk factors for developing PTSD in response to cancer include longer hospital stays, recurring cancers, invasive procedures such as bone marrow transplants, greater experiences of pain, previous traumas, previous psychological problems or high levels of stress in general. The protective factors against developing PTSD include a strong support network; help regulating emotions, and a good relationship with the medical staff.
PTSD following cancer should be treated sensitively. A child who is for instance triggered into fear states by the smell of a hospital or medical setting, or white lab coats needs help working through their present day anxiety while separating it from the pain or distress that went before. Children and parents may need help reframing present day thoughts that lead to anxieties and slow exposure to triggers to understand they are different (and safe) now, and help learning to calm.
The child patient as well as his or her siblings may develop more behavior problems than before the cancer treatment, become clingy or need help expressing anger versus acting it out. They may also want to avoid reminders of anything to do with cancer and even the medical system. In some case avoidance works to a certain point, but too much avoidance creates a cycle of trying to shut down only to have the painful re-experiencing start up again with another exposure to triggering reminders.
Families are strained when cancer is part of the picture. And each family member has their own way of responding to traumas--withdrawing, acting out, etc. adding an even heavier stress load on the marriage and family system. It can be hard for parents to meet the needs of everyone equally. Often the sick child gets all the attention and the siblings suffer and learn to withdraw or meet their needs outside the family creating complications later on.
Marriages are also at risk when one partner develops PTSD. For instance Stacey, a mother deeply traumatized by her young son's cancer diagnosis and treatment found that after a hopeful resolution of his cancer she could no longer sleep well and was plagued with nightmares, flashbacks of hospital procedures and flash-forwards of imagining a dire future--including the return of cancer and death of her son.
To cope with her psychological agitation Stacey started avoiding activities she previously enjoyed. She stopped going to her son's school or sports activities, didn't want to have sex with her husband or go out to dinner with their friends--responses that Jim, her husband found inexplicably painful. And when Jim became angry over not understanding that posttraumatic triggers were causing Stacey to "shut down" they would have painful arguments that resolved nothing.
Children and adults with PTSD do best to work slowly with help if needed, through their traumas by facing it in small steps and creating a narrative of sorts that works for them. One of the most painful parts of PTSD is dealing with a trauma that makes no sense and for which one has no cognitive frame--"You have cancer," is often too horrific a statement to accept. Or the suffering of a child in treatment is also too horrific to accept--at first. But over time, cognitive frames must be created in which one finds peace and accepts into one's life story that indeed this trauma occurred and now needs to be accepted as real.
Running away from it and living with the painfulness of cycling through flashbacks, avoidance and hyperarousal is no way to live. Medications in serious cases may be useful, and relaxation training is also helpful. Simply understanding what one has been through and that posttraumatic responses--even to cancer--are normal can help to work through it.
Most PTSD sufferers feel a sense of foreshortened future--that their lives will not be as long as previously expected or as fully lived. In some case that is the sad reality, but in others it is simply fear that needs, like the cancer, to be excised from the mind.
In the end, both the trauma and the cancer need to be accommodated and the sufferer must find peace in mind and soul with both--no matter the outcome.
Anne Speckhard, Ph.D. is Adjunct Associate Professor of Psychiatry at Georgetown University Medical School and author of several books. Her latest children's book isTimothy Tottle's Terrific Dream.
Wednesday, 23 April 2014
23.4.2014
https://drive.google.com/file/d/0B8BJNm2Os9RXT0NQeUtWMnB6bjg/edit?usp=sharing
Above is a link to the audio of Harry's funeral service. I know a few may be interested, whom were not there. Sorry, though that the photo slide show cannot be heard! But you can visualise Harry to the music, 'sing, by The Military Wives'. I felt the words of this song were fitting and the lines in particular 'you brought hope, you brought light, conquered fear, no it wasn't always easy. Stood your ground, kept your faith. don't you see right now the world is listening to what we say'.
Harry you were feisty like your mum and well the Dedman/Buckley clan.
These are the words I gave the curate John Parkin to read out at Harry's funeral for me. I chose not to speak, as I would have, had to remain composed and in a clinical state about what is the saddest thing any mother has to do, sit through her son's funeral.
Words by mum
Harry has always been a strong character. In fact when I was pregnant with Callum, friends would say that number 2 surely couldn't be quite so active, Callum in fact was more active walking at 8 1/2 months, but that's another story.
The determination and strength of character that Harry developed in his toddler years, was to see him through the rest of his short, but full life. Harry became poorly in October 2011 and it wasn't until 12 th November 2011 that we heard the words cancer and not just any old cancer, Neuroblastoma cancer. Harry had to undergo one of the most aggressive treatment protocols there is. He had 15 months of treatment in total. Harry would bounce back after each step of the treatment and be ready to rejoin his friends, playing out as any child his age did.
When we found out that Harry had relapsed disease in March 2013, we were determined to have as many adventures as possible and boy did we pack them in. Those memories and happy days will remain with us forever.
You, battled to the very end my dear, beautiful Harry, still wanting to finish the model army barracks we made. The only day you remained in bed was the day you died.
You remind me of the knight from 'Monty Python and the holy grail', the one whom had his arms and legs chopped off, but was still determined to fight. You, my brave boy was on so many, many drugs towards the end and was so very weak, but your mind was still active and you could still direct everybody even if your body could not function for you.
We love you to the stars and back and a zillion times round the world and back again, always and forever in our hearts.
So Harry from the moment you took your last breath, we continued to do our best for you. Our McMillan nurse drove us to Martin House hospice. No body bags needed, as you sat on my lap and I was able to cuddle you, free from pain, all the way to where you could lay to rest, in a bedroom, kept at a cold temperature to preserve you. Your daddy, carried you from the car to your bed and we made you comfortable. There we could visit you frequently, read the many cards we received, particularly the ones that your friends wrote. You stayed there, until the evening before your funeral service. We chose a red coffin for you and we decorated it with disney planes wall stickers. We know you would have approved. Daddy lifted you carefully into your coffin and helped to carry you out of Martin House into the car, whereby you would be taken back to Otley and the chapel of rest at Pickles funeral directors. Callum and I saw you for the last time too and we both cried at the finality of this poignant moment.
Having had much deliberation over the music to which you should go down the isle to and return to, we finally chose music which felt fitting. We did have some black comedy moments, when deciding and wondered about starting on 'Celine Dion's - your heart must go on', then slipping into ,'staying alive' by the bee gees, as your coffin gets taken into the air on strings, as the coffin bearers do the staying alive jig, then the coffin returns to the bearers and the music goes back to Celine Dion! Fortunately, we didn't have enough time to organise such a stage production! But I think you would have smiled and danced in your coffin!
However, I felt what we did organise and put together was a true reflection on your life and was such a beautiful service. It could not have been better. Your friends James and Rosie read 'no matter what' beautifully and it felt so fitting to include your friends in the service, as it did when the children waived flags to 'shine Jesus shine', with the words,
'Lord, the light of your love is shining,
In the midst of the darkness, shining'
Reflecting the darkness we feel at losing you, but knowing light will shine through this.
We would like to thank all and every one of you for attending Harry's service and for the £1021 collected at the end of his service.
This will be split between the church and The Thomas Ball Children's cancer charity. Some will go to research and the online just giving page will go towards the holiday lodges that the charity have.
Harry's party at High Royds, was a huge success too. Many of Harry's friends were there and enjoyed the food, bouncy castle, arts and crafts and the balloon release. In fact we have had confirmation where 3 out of the 200 balloons landed. One in Suffolk near where I grew up, one in Southern Germany and one in Austria. Harry, you must have been Flying high with the balloons to get them so far. This was truly magnificent to know they reached other parts of Europe!
Your book was also sold at your party and we now need a 3 rd reprint! We have sold nearly 200 books, raised £1257 including gift aid for Nuzzlet's farm. Had a further check for £160 for the farm and have kept £400 in cash to pay for another 200 books!
The Otley Lions book shop, is selling Harry's book, it is based in Otley, on Mercury Row, opposite the solicitors Newstead and Walker.
We have had some media interest in the book too, Harry would love that, he liked being famous, following his few seconds of fame in 'The Secret Millionaire' filmed in April 2012! He was in LGI having his stem cells harvested, when the film crew appeared!
So Harry, we are at a new chapter in our lives - learning to live without out. This is probably the hardest chapter of all and the one we need the most courage for. Your smile beams at us from all corners of our house as we catch glimpses of the many photos we have and we have a hole in our hearts now, I guess time will heal this, but there will always be a corner of our heart missing, because we no longer have you on earth with us.
We have your ashes back with us and it feels you are home again. We will scatter you, when the time is right. We have initiated getting a bench on the chevin for us to sit on and ponder your life with us and take in the view we have there, in front of your tree. A truly special place.
So, my dear Harry, I hope you are flying high and exploring the world above us and ordering all the other angels about! There are many dear angels up there, many your age, taken too soon.
Fly Harry Fly! X
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