Well that was a surreal telephone call...
An unknown number I answered for it to only be HARRY STYLES ringing from USA!!!
He wants to do a FaceTime or video recording for Jessica! The way she is at the moment I have told him that she would benefit more from a recording which he has said he will do for her and email to us!
November 2nd, 2016
Well I think finally today we are all starting to recover from the emotional hardship of the party we had for Jessica on Sunday. It was a party that in the build up to it we were extremely looking forward to but one that on the day I was beginning to dread due to its nature.
I am not afraid to say that as I set off in the car on Sunday I had a tear in my eye and on several occasions had feelings of turning around and going home instead. The party was a celebratory party for Jessica but in a way it had a sense of a farewell party, myself knowing that Jessica will never attend another party.
Jessica had been of mixed feelings of the party on the final few days of the run up, at times wanting to attend and at others being apprehensive of it, preferring the comfort of her nightwear and her comfortable home surroundings. On the day itself though she was excited as we drove to the venue but unfortunately as we were close by suffered from some excruciating pain and we had to give her pain relief to comfort her, this of course would also make her a little spaced out and very drowsy.
She was overwhelmed as we entered the venue, many guests already there and immediately chose to sit in comfort by my side in the area set aside for her. This would be where she would remain for the rest of her time at the party barring for a few occasions of me taking her outside for fresh air. On several occasions I asked her if she would like me to take her home but her determination to stay was evident and so I sat beside her and comforted her as she watched the goings on.
It was a fantastic event and one that sadly I had to leave early from with few goodbyes as her pain became too much and I had to get her home, much to her relief by this point, leaving Nicki behind with James to entertain all that still remained.
I can only apologise that I did not manage to speak to many people on the day as I was pre-occupied keeping Jessica in comfort. It was an amazing turnout and a great show of love for Jessica who was spoilt with all her gifts.
The day actually broke me with how much love there is for Jessica and showed me just how frail my emotions are at this moment in time. On many occasions I was reduced to tears by the slightest of things, trying my hardest to keep Jessica from seeing these tears.
There are so many people that deserve our thanks for helping to make it the day it was, in all honesty too many to actually list for fear of missing people out. All I can say is thank you! So much of the day was of no cost to us, people giving their time, services and products free of charge. It was an unbelievable success and I will never forget those that made the day the success it was.
An informative and interesting read published by The Telegraph recently...
"The problem is one of perception. Funding is dished out according to logic, but this logic is based on a partial picture. The “big four” cancers: breast, prostate, lung and bowel, affect thousands of people each year– and attract many more thousands in funding. Children’s cancer research attracts a tiny proportion of the money available from big funders because of its rarity: based on data collected by the National Cancer Research Institute, out of total cancer funding of just over £3,000 million, some £83 million is relevant to childhood cancer – so just under 3 per cent.
Yet, as a cause of death in children, cancer tops the list as Grim Reaper-in-chief: one in 500 children in the UK will develop some kind of cancer by the age of 14, and around 250 children die of cancer every year. Looked at this way, the picture is inverted. Cancer in children no longer falls to the bottom of the list, it is right at the top: a major threat, a vital priority."
This is why I published the picture of Jessica a few days ago. If its publication, which has now been published by news outlets worldwide, attracts attention to this plight then it will have done its intended purpose.
Jessica's blood levels have deteriorated quite significantly over this last couple of days, a lot quicker than we anticipated, to the point now where her breathing is slow and laboured and her heart rate increasing to try and get enough oxygen to her most needed areas. Because of this we now know her time remaining with us is sadly limited.
We as a family have been overwhelmed by the recent comments and messages we have received, so many in fact from all over the world that we have been unable to read many of them as we care for Jessica.
We will now be completely but temporarily stepping back from all social media so as to have no distractions as we comfort Jessica during whatever time she has left. We are all understandably heartbroken that our attempts to give her additional extra time combined with the quality of life that she deserves have not worked and I thank you all for the various suggestions to manage this disease recently.
Please as a family I ask that you respect our privacy in these final times. We have so far been very public to try and raise awareness of this disease and thank you all for your support and sharing of Jessica's story. Now is the time that we ask for privacy whilst this journey comes to an end.
I am in tears as I write this, not wanting but understanding the end is near. We have always wanted to do what is best for Jessica and we believe that in now stopping all but the pain management that is now at a level to give her comfort we will give her the most comfortable and dignified passing.
Once more I thank you for your comments, messages and fundraising attempts. As and when time allows we will choose a charity close to ours and Jessica's hearts to assist in the research of this disease so hopefully in future fewer children and families have to suffer this same fate. At the same time the GoFundMe page is in the process of being ended to allow us to look into these said charities and choose which will benefit paediatric research the most. We will also look to publish the chosen charities in future so that any further donations that people wish to make in honour of Jessica can be made directly to them.
Thank you for being a part of this journey. After Jessica's passing the page will remain to be updated to act as a memorial to Jessica whist also serving the purpose of hopefully furthering our attempts to increase awareness to childhood cancer and ultimately hopefully a change in funding to the research that is much needed.
November 8th, 2016
Jessica and ourselves have had several visits this last couple of days from our Macmillan nurse, the hospice team and the local community nursing team. They have been checking on how she is doing and although she is comfortable it is shared belief that she is now deteriorating significantly.
Jessica's days have almost become her night time and her night times her day times. I was up with her until 04:30 this morning as she watched films whilst occasionally drifting in and out of sleep. The nursing team have said that it is quite normal for this flip of day and night and it will probably continue to be that way. She sleeps what is most likely around seventy-five percent of the time with her best hours being the middle of the night.
Her breathing is becoming even slower, sometimes ten or fifteen seconds pass before she finally takes in a breath, a sight that makes mine and her mummy's heart skip. She still has little to no control over her bladder and bowels, frequently having accidents causing her further upset.
It is heartbreaking for us to watch as her body fights defiantly puts up a fight to this disease. We have been told to expect to see her sleeping more and more this next few days as different parts of her body begin to shut down so that the vital areas get the oxygen and the energy they need.
We are now spending all of our time home with Jessica, allowing only our parents and medical professionals to come and visit as she does not have the energy or the want to see anybody else.
I mentioned the other night that we would not be posting any further updates at the moment but Jessica is currently resting and I wanted to post up the attached petition. We have over eighty thousand likes on this page now and I would like to ask a favour of all who can partake, please please please sign the attached petition. Once the petition gets one-hundred-thousand signatures it will trigger a parliamentary debate. As we have mentioned previously our aim now is to get childhood cancer to the forefront of research, to try and help make breakthroughs in treatments so fewer families have to go through this journey.
Thank you in advance for taking time to look at this petition.
November 10th, 2016
We are still receiving messages via GoFundMe and through Facebook asking if people can still donate to Jessica now that we have closed the fundraising page.
As has previously been stated we closed the page that was originally set up to provide comfort to Jessica and to help us say our goodbyes. We now want to look at and check the work of charities which help to fund research in to paediatric cancer. We have of course only been spending our time with Jessica and doing little else but comfort her but I do know of a charity that we have been aware of for the last thirteen months. I have previously looked at their work before and as such in the interim of us doing further research I am happy to direct people to www.neuroblastoma.org.uk
This charity is close to our hearts due to the work they are doing for the same cancer that Jessica has. I would ask if anyone still wants to donate in honour of Jessica that you do so to them. All childhood cancers need further research and we will look at other charities when time allows but for now this is one that I personally back. I have also informed any media outlets that are still looking to feature Jessica to publish this charities details as they are actively fundraising.
Thank you.
November 11th, 2016
Good evening to all. I know that some of you are awaiting of updates on Jessica and have been asking of her so whilst she rests, here it is...
Jessica has shown quite dramatic deterioration over the course of the last few days. Although myself and Nicki see this deterioration it is more noticeable to those that only see her every few days such as the Macmillan nurses. This afternoon our Macmillan nurse came to have a checkover of Jessica and to check on mine and Nicki's wellbeing. She is happy with the comfort levels of Jessica and is amazed at her resilience but has today pointed out the tell-tale signs that Jessica is showing that the end is near.
Jessica is now spending ninety-percent of the day in the comfort of her bed with me and Nicki staying by her side in turns or together. She is now no longer touching food at all and drink is being consumed in only small amounts. Some of her symptoms I am not prepared to go into the details of, not needing or wanting to but they are heartbreaking for me and Nicki to witness.
I think that what is worse than witnessing some of the horrendous symptoms is the fact that we now cannot even cuddle or hold her such is her not wanting physical contact for fear of pain. The only time I get to hold her now most often is if I carry her up or down stairs. Barring for that I can only rub various parts of her body that are giving her the most pain at that moment in time in a hope to comfort her.
I cannot put into words how hard it is to watch her and listen to her worsen as each day passes. She offers us very little in the way of conversation now, her energy too little, but a phrase that I think will haunt me now for a lifetime is "Oh my gosh". I cannot tell you how many times I have heard her repeat that phrase now as she tries in vain to muster the energy, the strength and the will to move even the slightest of ways.
She has today started to be sick quite frequently, a sign that she is possibly not tolerating or digesting her oral pain relief as effectively as before. If this continues or indeed if her pain becomes uncontrollable we will have to resort to a subcutaneous diamorphine infusion so that the pain relief can enter her bloodstream directly. We have all the drugs and the pumps here at home already so if this is the case our palliative care team can come immediately and start this infusion with little delay.
From mine and Nicki's point of view we are still hopeful to keep her in the comfort of our home in her final days but only if it is not to the detriment of Jessica's comfort and wellbeing. She is definitely more settled at home but only whilst we are managing to cope. If we can no longer manage then we will have to make our way to the hospice that is covering us at the moment.
Today I made what is possibly my hardest phone call so far, a call to the funeral directors of our choice. I broke down more than once as I spoke to the director about our plans for Jessica's goodbyes. Never before have I had to arrange a funeral, never before have I lost anybody so close to me. That phone call broke me as I started to put in motion the preparations for what will be our final goodbye.
After our update last night regarding Jessica's condition she started to suffer quite badly. Firstly with anxiety, then with regular uncontrollable sickness followed by an increase of pain.
It became quite apparent that her stomach has now all but stopped digesting which now makes her oral medications useless. I was up with her all night, not sleeping at all, fearing for her wellbeing but also not wanting her to feel alone, especially if it was to be her final night with us.
When everything became unmanageable and all our options were exhausted we contacted our palliative care team to come out to Jessica. We administered a sedative that we ourselves can give so that she could be calm whilst our palliative care team arranged and concocted a medicine tailored for her needs. This now to be given by a twenty-four hour continuous infusion pump, a needle in her thigh allowing the medicines to go directly into her blood stream.
Almost instantly after giving Jessica the oral sedative she calmed and gripped my finger tightly as she drifted off to sleep, moments like this now cherished more and more. She felt very little as the subcutaneous needle was put in place and the infusion pump started. Since then she has slept a lot, a combination of tiredness and the new medication allowing this comfortable rest.
The infusion she is on is a combination of three medicines... An anti-sickness, morphine and a mild sedative. This now seems to be working a lot better than the oral medications were recently, the sedative at a level to not completely sedate her but enough to remove her anxiety.
This evening the palliative care team have returned as she has still been whinging a small amount in her sleep so they are increasing the amount of morphine further still as well as also making a slight increase of sedative. Thankfully this is the most comfortable I have seen her in a couple of days and she is now more respondent to at least me, now wanting me to cuddle up beside her again, to rub her aches and pains, to hold her hand.
Hopefully now that the tweaks have been made to this new medications Jessica will have a more settled night and a more peaceful and comfortable passing whenever that may be.
November 18th, 2016
Well Jessica is defying all the medical professionals opinions and is still fighting!!!
Countless days we have been told that she is showing another sign that the end is near, countless days we have been advised to not leave her side and constantly we have kept a bedside vigil and yet she still fights on!!!
Technically in medical terms she actually shouldn't still be alive, she has virtually no haemoglobin and hardly any platelets amongst various other issues. Her body has all but given up, no strength to be able to even hold her own head up. Still though she fights! I have to physically move her entirely now, moving her to alleviate pressure spots, moving her back into position in the bed as she slides down every so often.
Her body has given up but her head most certainly has not, not in the way of grit determination anyway. I am actually saddened by her fighting spirit though as it is this and only this that is keeping her alive. Some may find it hard to comprehend that I am saddened by this fight to keep herself alive but if you saw her you would understand.
In terms of muscle and fat, she has none at all, so little in fact that you can make out individual bones throughout her body, both seeing and feeling them. So little strength that when I move her limp body I have to physically prop her head up as she cannot manage even this. Her massive tumours are hard to touch, highly visible and protruding from all over her now tiny frame. She is almost transparent the amount of colour she has lost through such little blood being present. She is cold to touch such is the lack of circulation around her body, in fact to touch her hands you could be forgiven for thinking she wasn't alive such is her coldness. Her breathing is slow, heavy and laboured, sometimes with a whimper after each breath taken. Often it is her diaphragm doing her breathing and not the chest muscles such is her lack of strength and energy.
She still has a determined independence as she musters all of her energy to firstly mumble almost incoherently that she wants to hold her juice and secondly as she tries to lift the cup to her lips, her grip faltering as she repeatedly drops it. Still though she is insistent she will do tasks like this with little help from us.
Jessica has now not left the bed since Thursday of last week, lying instead almost motionless in her bed beside ours. She is on huge amounts of morphine to try and keep the pain at bay whilst also now being heavily sedated to keep her calm due to anxiety caused by a lack of breath etc. Me and Nicki have tried various ways to give her the comfort for her to finally pass away but for whatever reason Jessica is deciding that it is not yet her time to leave this world.
It's a nightmare to watch and I cannot even begin to imagine what Jessica is going through. I cannot even begin to explain how truly horrifying it is to witness as her parents.
As much as I want an eternity with my beautiful princess, I only want eternity if it is with quality. This life now is nothing but cruel to Jessica and I hope she soon finds the comfort she needs to leave this cruel world behind and to shine down on us all.
I love you so much Jessica and I don't want to let you go but seeing you fight this horrendous disease shows me that this world is just too evil for you to stay any longer. Close your eyes one last time baby girl, leave this cruel world behind and watch down over your little brother.
November 20th, 2016.........06:07 am
Last night, although painful for me, was amazing!!! Finally after over seven days of hardly being able to go near my princess I was able to pick her up in my arms and cradle her frail and tired form.
Every day has been a battle to get her and keep her comfortable using pain relief and sedatives. Through all the pain relief and sedatives she has still not had the comfort to allow me to do anything more than rest my hand upon her, perhaps hold her hand and occasionally kiss her dried pale lips.
Last night however we managed to get her body to absorb enough of the medicines that this time when changing her bedding, instead of having to merely move her onto our bed, Jessica actually let me and seemed comforted to have me pick her up and rest her on myself for around twenty minutes or so. I can honestly say it was probably the best and most cherished cuddle we have shared in a long time.
To be able to finally wrap my arms around her, hold her close to me and have her head resting on my chest brought tears to my eyes. I told her countless times how much I loved her, kissed her forehead numerous times and told her to close her eyes and go to sleep. I truly did not want to lay her back in her own bed once it was made but eventually had to do so.
Holding her close I found a sense of guilt in my happiness to hold her. I cannot even begin to comprehend the pain that must tear through her body which has stopped us from being close to her in previous days. Me selfishly wanting to hold her to try and comfort and feeling aggrieved at being pushed away.
I really do hope the end is near for her now. Last night on lifting her to change her bedding and bathe her we found sores on her back not previously there only a couple of days ago. So frail is she now that these sores are now open wounds, weeping and bloodied. She does not feel them due to her medication but they are horrific to see. As I lay her back down, after applying creams and dressings, I tried to rest her on her side, as she had lay on me. Alas though she quickly became uncomfortable from her tumour growth and had to find comfort once more on her back.
I hope this cuddle gave her enough comfort to know that we are happy and ready for her to leave this world. I cannot even imagine how much more her frail body can take.
November 20th, 2016 ...9.43am
I feel both sadness and relief in informing you all that Jessica finally found peace at seven o’clock this morning. No longer does she suffer, no longer does she feel the pain of the physical constraints of her body.
Now my princess has grown her angel wings and has gone up to play with her friends and loved ones. She will now watch down over her little brother and ourselves until one day we are reunited again.
Last night she finally allowed me to hold her in my arms and we had a big cuddle as I told her how much I loved her. I told her again that it was okay for her to close her eyes and go to sleep and I kissed her forehead and her lips numerous times. It seems like this is what she needed to finally allow her to find comfort in her passing as within eight hours of this cuddle she finally took her final breath. She was a daddy’s girl from the start and even right up to the end. I feel like a massive part of me has just been torn away but I am so glad that I could give her that comfort in her final hours. She passed peacefully and calmly with not even a murmur.
Thank you to everyone of you who has shared and has been a part of our journey. I ask now for privacy for us and our family as we mourn the loss of our beautiful princess.
From a heartbroken daddy of the most amazing and beautiful girl.
November 20th, 2016.......... 12:25 pm
Fly high my beautiful princess, watch over me, mummy and James. Ride free on horses in heaven and enjoy being with loved ones and free from your pain.
I will never forget you and I am honoured to call you my daughter. I love you more than words can convey, much more than you will ever know.
I am not ready to let you go Jessica, you are my little princess. You are the most amazing, strongest and bravest little girl and I am blessed to be your daddy.
Never again will I hear your joyful cry out of "Daddy!!!" as I walk through the front door, never again will I hear that infectious giggle of yours as you mischievously climb and jump all over me, tickling me as we play fight.
I have so many wonderful memories and yet so few as you were taken far too young. I should be led here planning our next family trip not led here planning your funeral. I should be led here singing alongside you your favourite songs not adding them to a playlist to be played as we say goodbye to you.
The bond me and you share is truly amazing, you always were a daddy's girl, often only calming when I wrapped my arms around you. I'm sorry I couldn't protect you from this evil world baby girl, I'm sorry you had to suffer the way you did. It breaks me to think about what you have had to endure for a quarter of your short life and it will be a cause of my nightmares for me for years to come.
I miss you so much baby girl, I miss your voice, I miss your smile, I miss you wrapping your arms around my neck as we cuddle. I miss your spontaneous statement of "I love you Daddy", a statement you came out with several times daily. I miss you Jessica, tears rolling down my cheeks and wetting my pillow as I think of you and the bond we shared.
Goodnight my beautiful angel, please come and give me a cuddle as I sleep xxx
November 22nd, 2016
Well yesterday was an extremely long and hard day. When Jessica passed on Sunday morning we decided to keep her at rest at home, moving her back into her own bedroom to allow her one final night in her bedroom. I dressed and moved her on Sunday after she passed and I found it to be very hard emotionally in doing so. That though was a small task in comparison to yesterday.
Yesterday morning at 11:30 the funeral director arrived at ours to collect Jessica and to take her to repose in their care whilst also allowing the post-mortem for tissue and organ donation for research. I decided that I could not allow anybody to carry my princess out of our family home and I felt that it was my duty as her daddy to do it myself.
I held back the tears as I lifted her body from her bed, wrapping her in her favourite pink blanket leaving just her face exposed, almost like you would with a new baby. I carried her carefully out of her bedroom and down the stairs, my legs shaking as I felt so weak but yet keeping strength and composure through determination to do right by Jessica. As I reached the front door both myself and her mummy took a moment to give her a final kiss and say our goodbyes before I carried her out to the waiting car.
As weak as I felt when doing it and as numb as I felt after the event I am glad that I was able to carry her from her bed, not wanting it to be a stranger with whom she made this final journey but instead the arms of her daddy.
November 22nd, 2016
Well it's a busy day for us today. Yesterday we met with the funeral director to start making plans for our final goodbye to Jessica.
It was extremely emotional sat with him discussing what will become the finality of this long journey. A lot of tears were shed as we got into the details of this goodbye. The hardest part of this meeting by far was choosing the coffin that Jessica will be carried in. As parents we should not have to make these choices, it should be Jessica in many many years to come that is planning our funerals, not us planning hers.
Today we have to take our choice of dress for Jessica to be dressed in for this final part of her journey. Looking through her wardrobe at all her beautiful dresses, each one with its own special memories attached, the one we choose soon never to be seen again.
Hopefully by the close of today we will have the main parts of her funeral arranged. We have had a call from the local police who are coming to visit us this morning to make arrangements of their involvement in this day. Jessica captured the hearts of many local officers as documented in her journey and they wish to play a part in her farewell.
At lunch time today we must return to the place where nearly five years ago we sat with Jessica, at that time a cute baby of only a few days old, to register her. This time however Jessica will not be with us, this time we will not leave the register office full of excitement for the life ahead, this time instead of a birth certificate we will leave with certification of her death.
After lunch we are going to view what will hopefully be the venue for our celebration of Jessica's short life after the finality of the church service. We will also be making arrangements for our choice of flowers to accompany Jessica on this day of her life. Details will be released in due time but as a family we are requesting that instead of friends offering flowers for Jessica, people instead make donations through our funeral directors to two chosen charities that have helped us and Jessica greatly.
I would like to thank all who have left comments and sent messages to us, too many for us to read fully and to reply to but a lasting memorial to Jessica that in time we can look over to find comfort in how far she has reached in her short time on Earth.
November 23rd, 2016
Jessica's funeral will be held on Monday 28th November at 10:45am at Saint Mary's Roman Catholic Church, Catlow Hall Street, Oswaldtwistle.
We have been touched by people's wishes to join us in saying goodbye to Jessica and although family and close friends take priority in the church, all who wish to attend are more than welcome to join us.
Flowers to accompany her on her final journey are being provided by ourselves and Jessica's grandparents. Anyone else wishing to provide flowers etc. we would instead ask to donate money through the funeral directors to our two chosen charities.
After the church service there is to be a short service at Accrington crematorium and although people are welcome to pay their respects as Jessica arrives here I would ask that it is only family and close friends by invite who attend this service as this is a chance for our private and final goodbye.
Following on from the crematorium there will be a celebration of Jessica's life but again this is something that we wish to keep private between our family and friends.
The amount of love that Jessica has been shown is truly humbling and it is for this reason that we as a family are happy for people to join us for this public church service or to pay their respects as we arrive at the church and crematorium. Obviously though this is our little princess and it is only right that our family and friends get the chance to say goodbye and celebrate her life in relative privacy.
Thank you xx
November 24th,2016
Today me and Nicki finally got to see Jessica for the first time since I carried her out of our family home on Monday morning.
Finally she is back from Manchester where she had a post-mortem to allow removal of tissue for research. The funeral directors have worked their magic on our princess, washing and styling her hair, dressing her and taking care of the little details.
Both myself and Nicki were so scared when we arrived to see her this afternoon, not knowing what to expect since we last saw her. Our fears were quickly gone as we were led in to the room that she rests in. She looks so beautiful and so peaceful led comfortably in her pink coffin, her favourite pink blanket keeping her snug, her head resting on a heart shaped Disney Frozen pillow.
We both took turns in holding her hands, kissing her and telling her how much we miss her and how much we love her.
Neither of us wanted to leave her there alone, especially knowing our time to actually hold her hands, give her a kiss and rub our noses against hers is now very limited. In only a few days time the only thing we will have left is our memories, photographs and her belongings, gone will be her physical being.
I still can't believe this is real, the expectation of this actually happening not bringing any comfort now. Our bedroom feels strange now not having her bed beside ours, her room feels cold as I walk in and see all her toys and belongings but Jessica is nowhere to be seen. My sleep patterns have become more normal in that I now once more sleep at night and wake for the day but sleep is broken and little. I keep expecting to wake in the night to Jessica telling me her film has finished and to find another for her to watch, such was her final few weeks. A lump was brought to my throat first thing this morning as James came into our bedroom and upon seeing a picture of Jessica started repeating her name but fortunately I was quickly able to distract him, far too young to be able to understand what has happened to his big sister.
From the moment I first held you I knew you were special. The most beautiful and precious being I had ever laid my eyes upon. Instantly you taught me the meaning of true and unconditional love. In those first moments I promised to protect you and always be there for you, I did what I could but you were needed elsewhere.
In your short life in this world you inspired me to better myself for the betterment of your life. You have done more in your near five years on this earth than I can hope to do in a lifetime and you have inspired more than just myself.
I hope you are having fun now my princess, I hope that you are playing the way that you should have been able to on this earth. I know that you will always be with me, a piece of my heart forever owned by you.
Sleep tight my angel, I am here for you whenever you need me. I think of you daily and your legacy will forever last. You made me the person I am today and I am blessed that you were mine for the brief time you were here.
No words will ever truly convey how much I love you and how much you mean to me but know this baby girl, soon we will be reunited and this time I will never let you go. For now watch over me, your mummy and little brother, our physical beings separated from you but our souls still together.
I love you princess xxx
As most who follow Jessica's story know tomorrow is a huge day for our family as we say our final goodbye to Jessica.
Tomorrow is also a massive day for all families in the UK as tomorrow is the day that the government debate the recent petition relating to increasing funding for paediatric cancer research.
Fingers crossed that the result of this debate is one that we all pray for and that paediatric cancer finally gets the support it so badly needs. Too many children have suffered using medicines sometimes not evolved for decades due to a lack of research and funding.
How good would it be if the day of Jessica's funeral was also the day of change going forward!
Monday, 28th November.
Goodbye Jessica.
As the hearse turned the corner of our street the reality of the day hit me like a freight train. All too quickly the surreal became real and a wave of emotion coursed through my body. This was to be the day we said our final goodbyes to my princess.
Seeing her coffin proudly displayed amongst flowers from ourselves and family and reading messages to Jessica with those flowers broke me. For numerous days beforehand I had been able to go and visit Jessica, holding her hand and giving her kisses, this day would be the end of this.
As we set off in procession behind the hearse I could barely look at those that stopped to line the route, focusing instead on the coffin and watching the police horses that lead the way. As we turned the final corner on the approach to the family church I was humbled seeing the crowds that awaited her arrival.
So many of our family, friends and strangers turning out to pay their respects to my beautiful daughter. I could not muster the strength to carry her coffin myself, my legs weak and my heart breaking I asked the the funeral director to arrange for his men to carry her in. I had comfort that I had carried her body out of our family home seven days previous and that to me was the most important part of this journey.
The church service was perfect and fitting for Jessica. Every detail already spoken about with Father Daly previous to the service but carried out in such a way that was perfect for her send off. I did not even see many of those who attended, as many already inside the church as those who waited outside on our arrival. As I followed Jessica's coffin on our departure I tried to look at the gathered congregation but on numerous occasions I had to focus elsewhere as seeing the love for Jessica broke me.
I cannot thank Lancashire Constabulary enough for the planning and the effort they all went to on the day to allow the procession to flow so smoothly. From the police horses escorting us to the church to the traffic control on our procession to the crematorium, closing off road junctions to allow the procession to go ahead unobstructed. Seeing roadside tributes and families setting off balloons had us all in tears as we made our way to the crematorium.
On our arrival at the gates of Accrington crematorium the police horses once again greeted us but this time also Jessica's two favourite horses, Jessie and Bobbysox, from Accrington Riding Centre, a place very close to Jessica's and our own hearts. I shed so many tears watching as these two horses led the police horses in procession through the cemetery grounds to the crematorium, the rider of Bobbysox herself only eight years old and a girl who Jessica had become close to and told on numerous occasion that she would one day ride with her when she was better.
Inside the crematorium it was invited family and friends in attendance but still standing room only such was the love for Jessica. I had prepared myself mentally for the start of the first song, Ellie Goulding's 'How Long Will I Love You', but hearing the gathered congregation wail set me off once more.
It was a short service inside the crematorium, a chance for our final goodbyes. What I had not expected was for Father Daly to ask myself and Nicki to join him in blessing Jessica's coffin one final time with baptism water. I looked at Nicki who indicated she was happy to do this and we both joined him, me starting the blessing followed by Nicki. As Nicki started she nearly collapsed at this final act and I had to grab her and hold her close to me as she sobbed uncontrollably.
Finally Jessica's coffin was carried to the catafalque as the final piece of music, Elizabeth Mitchell's 'You Are My Sunshine', was played and the curtains were drawn closed.
It was a truly humbling and overwhelming day and we have so many people to thank but too many to list. It was a perfect day, if that is a word that can be used for such a sad event, and the sun shone brightly, Jessica shining down on us for the entire day. I had a drink in honour of Jessica as the sun set in the early evening, the clear sky turning pink in honour of her.
Well it has been a week since we said our final goodbyes to Jessica and it has been fifteen days since she passed away.
It has been such a surreal time and many times I struggle to comprehend the enormity of what has happened. As a whole there has been a sense of relief, relief of her no longer suffering, since Jessica's funeral and me and Nicki have managed some much needed quality time to be able to move forward as strongly as is possible.
I am finding now that the day to day stuff is becoming a bit easier but little things set me off and leave me angry and upset. Tonight I set about trimming my beard, something which normally offers no problems as it is a familiar task. Tonight however I ended up messing up the whole task and as a result ended up trimming the entirety of it extremely short in comparison to normality. The last time I had it this short was of my choice but upon Jessica seeing it she burst into tears and was upset that I had shaved it so short, so upset in fact that I vowed to her that I would never shave it so short again. She loved to play with my beard as we cuddled up and it tickled her as I kissed her and so I used to blow raspberries on her neck to make her giggle. Tonight in my mistake it brought these memories flooding back and was my cause of upset and anger. I know it's silly, I know that Jessica is no longer here to stress at me for shaving it short and I know that it will soon grow back but in that moment none of this could offer me any comfort.
I had to get out of the house and get out for a drive as being home was distressing me too much in this moment and even now I am sat in the car listening to some of her favourite songs wanting her to be sat beside me singing along to them.
I miss you so much baby girl, I still cannot believe that you are not here making me laugh and smile.