October 5th, 2016
I was hoping to never have to write the following update but today we as a family have been rocked by the latest revelations of Jessica's fight against this pig of a disease.
Today we visited Royal Manchester Children’s Hospital for a routine CT scan and for a blood transfusion to correct her haemoglobin levels. Whilst at the hospital we met with Jessica’s oncologist due to some pain that she has been in this last week. Dr.Penn has given Jessica a thorough physical examination and found that although her existing tumours appear to be of a similar size to previous examinations he believes that the new pain, in new areas of her body, is the progression of this cancer. This is also based on some recent test samples that have come back showing her levels raised in areas that also indicate this progression.
We knew something was wrong straight after his examination as he asked for a nurse to take Jessica away to play whilst he spoke to us. The following conversation has left us heartbroken and in pieces. Despite her appearing to do so well after the recent radiation treatment it looks like the cancer has started to spread further. We are now left with very few options as to where we now go on this hellish journey.
In short there are little to no treatment options remaining, those treatments that do remain are only in the very early experimentation stages and will most likely offer no further benefit to Jessica. They are very intensive treatments that will most likely offer no gain but would make Jessica very poorly whilst ongoing. Our other option is to stop treatment and manage Jessica’s symptoms as they worsen and progress but to do so from the home environment where we can offer as much normality and comfort as is possible. A stop to treatment would also allow us to remove Jessica’s Hickman line from her chest and allow us more freedom to go and make the most of what time we have remaining.
We know that each child and each cancer is different but we have asked Dr.Penn what is the likely timeframe we have to work with and he has told us that in his experience we are now looking at a lifespan more based on months rather than anything more. This has come as a massive shock to us as although we knew this day could and most likely would come around we certainly did not expect it so soon, especially not with her recent wellbeing.
As you can imagine both myself and Nicki are in a place of hell right now, a huge decision to make, one I wish no parent to have to make. We want to do what is best for our precious princess and we will return to Manchester next Wednesday to give our decision to Dr.Penn.
I would like to take this opportunity for all those recently been involved in raising money for Jessica and to all those who are continuing to raise money for her. This money will now be used to try and make the most of what time we have left with our special girl, to give her the enjoyment she needs and deserves and to offer her the care that she needs.
We have a lot to carefully consider this week and I offer our apologies now if we are slow to reply to anyone on this page over the coming days and weeks. We will keep everyone updated of any developments as and when on here.
Please keep Jessica in your thoughts and prayers.
8th October 2016
Jessica's Big Party --- Sunday, 30th October, Accrington
This last thirteen months we have become accustomed to seeing Jessica’s limbs thin from a combination of muscle wastage and at times a lack of eating. Tonight however I was shocked to see her naked form, fresh from a bath the usual frailties all too apparent but now also something more.
The tumours from before still apparently dormant but the progression starting to show all too obviously. Jessica’s right arm has now got the tell tale signs of this progression, the dark mass lurking below causing visible swelling.
It came as a huge and upsetting shock to see this visible progression, something that even as little as a few days ago we could not see. I am not ashamed to say I had to walk out of the bathroom so as not falter in front of Jessica.
Nothing can prepare me for what lies ahead but what scares me more is the pain and the suffering that Jessica will suffer at the hands of this cancer before her body can take no more. As her daddy, as her guardian this is what is scares me more than anything. She was born into my protection, a protection I have failed to be able to offer this last thirteen months. I feel a sense of failing despite knowing there is nothing I nor anybody else could do to offer anything differently.
Tonight was a real shock, I felt my stomach churn as she turned to me and I saw the visible lump surrounding her tricep. Her heartwarming smile a stark contrast to what I saw further down and sending me over the edge. I know I need to show her strength, she is a daddy’s girl and when I am strong so is she but at times this strength is beginning to crumble.
We have come to the hardest decision we have ever had to make.
Tomorrow in our meeting with Jessica's oncologist we will be confirming our decision to stop treatment for Jessica. It has been by no means an easy decision to come to but our conclusion has come from what is best for Jessica.
We want to be able spend quality time with Jessica, away from the clinical confines of a hospital bed, making the most of whatever time we have in the comfort of our family home. We will of course be supported by Royal Manchester Children's Hospital alongside the care of Derian House hospice.
This morning we have had a visit from our Macmillan nurse to discuss this ongoing support and what the future will hold. Once again Macmillan have been brilliant in discussing what we can expect on this journey.
It was a highly emotional morning as our talks focused on end of life care, a phrase I have previously been scared of but one that I now find some comfort in. We feel a great relief from this conversation knowing that we have chosen the right path for Jessica.
As a family we request that talks of further possible treatments are not had with ourselves. We have tried all we can and explored every avenue to make a difference. We have had numerous messages asking if we have considered X, Y and Z and believe me we have looked long and hard at all the options available.
Sadly in this life sometimes nothing can be done and this is something we have had to come to terms with, however hard and upsetting it has been.
Our decision will allow Jessica to end her life with best possible dignity and comfort. The choice of further treatment was fraught with complications and ill-health due to treatment and with little gain. It will allow us time to give Jessica distraction from the pain and from the symptoms and to give her as much normality as possible.
We thank you for your continued support and for your comments and messages. They mean a lot to us and this page will serve a purpose to one day enable us to look back on these times and see the support that Jessica has.
Well that's it, our decision confirmed with Jessica's oncologist. In a way by the end of the meeting I felt a huge sense of relief as a week of deliberations finally concluded.
It was again quite emotional as we spoke of what we as parents wish as the best for Jessica. We have decided to accept some targeted radiotherapy to help give Jessica some comfort from the symptoms and pain. This will be quite intensive beam therapy so that we do not keep having to return and can enjoy our time as much as possible. This will start soon as the tumour on her arm is quite swollen and this will be the first area to be given this targeted therapy. We have declined a low dose oral chemotherapy course as it is not guaranteed to give Jessica relief but will certainly cause hair loss, a distress that Jessica does not want.
The conversation then turned to "Do not resuscitate" forms which we have decided to give consent to be signed. Our view is that when her time does come we allow it without allowing any prolonging of suffering. There is also an option to withdraw consent of the use of antibiotics if she gets a fever. For now we have left this one unsigned as is her wellbeing at the moment that we are happy to treat fevers but in the future it is an option we have up our sleeves to allow what is best for Jessica.
It was a huge relief once everything was in place to hear Jessica's oncologist say that if he were in a similar position with his daughter, that he would like to think he would do the same as we have done. As much as we knew going in to the meeting that we were doing the right thing, to hear those that work with this daily offer the same thoughts also gave us comfort in our decision.
Something that has been close to our heart since this diagnosis has been awareness and part of that awareness is research. Before we have been asked we have offered donation of any skin tissue or organs that will help further medicine to treat this pig of a disease. If this donation can go some way to helping other children and families from suffering the way that our family has then at least there would be some positivity come from Jessica's passing.
Jessica's Hickman line (the line directly into her chest) is now scheduled to be removed. This the final stage in our decision to stop treatment and will give Jessica so much more freedom and comfort. Hopefully this is to be removed on Tuesday of next week, Jessica's oncologist wanting to get things done quickly for Jessica to allow as much normality as is possible.
Once again thank you for all of your messages, although we have not replied to many we are eternally grateful for your support.
She has had a distressing morning as we had to have a nasogastric tube put back in as she is not eating anywhere near enough to sustain her and has a lack of energy due to this. It is in now though and soon forgotten about apart from her protecting it from anyone in case they catch it. The nasogastric tube was something we were all hoping to avoid, mainly because of its visual stigma, but is a necessity that cannot be avoided unfortunately.
This afternoon will more than compensate for this distress and she will love the show and possibly meeting the characters.
Just arrived at The Christie for radiotherapy to try and alleviate Jessica's pain and give her comfort.
Her pain and her tumours are now so severe that to touch her right arm and right leg causes her excruciating pain and she has lost a lot of mobility, even struggling to stand at all now.
She is in good spirits this morning though, and is showing her cheekiness, her wit and her smile more than we have seen this last couple of days.
Hopefully this one intense session of radiotherapy will give her some comfort and allow her a bit more mobility.
October 17th, 2016
We have just seen Dr.Rao, the specialist at The Christie whom Jessica was under the other month for her MIBG therapy.
It was a bittersweet meeting as the last time he saw Jessica she was doing so well coming out of the treatment. He has looked through all of Jessica's scans and has informed us that although Jessica's tumour in her leg is causing her pain, it is not this that is causing her immobility. He has trawled through her scans and found a tumour on her right hip that is constricting blood vessels and nerves that go to the leg and it this causing her immobility. It has actually been revealed today in a physical examination that she has lost a lot of feeling in her right leg now. We knew her leg was getting worse as she physically moves her leg with her hands now but this lack of feeling came as a shock to us.
What was an even harder pill to swallow is the fact that radiation treatment she had in August has actually calcified (basically killed) her primary tumour and this is no longer active or causing issue other than being an unwanted mass. This was hard to hear as for so long this primary tumour was active and causing issue, to hear that it is now no longer active but instead it is now the secondary tumours causing all this carnage was hard to swallow.
Meetings like this really bring to the forefront how aggressive this cancer is and how quickly this can progress.
Jessica was a super brave girl yesterday on what turned out to be an extremely long day. We set off from home yesterday at 10am and did not get home until 7:30pm!!!
Normally The Christie would not plot and treat tumour sites on the same day due to the complexity in plotting the site from CT scans and transferring it into data for the radiation technicians to interpret. However due to Jessica having this done for comfort it had been agreed to do it in one day.
She was given two high dose sessions, one to her right arm and one to her right leg, targeting the bulk of the tumours in those areas to try and alleviate her pain. Whilst also being prepped for her arm and her leg her specialist also decided to plot for her pelvis and hips. The treatment for this area was not done yesterday due to side effects from multiple areas being targeted in one session but she is now marked and plotted ready for a session early next week to target the hips and pelvis. The hope of this session will be to try and give her back some feeling in her right leg and possibly some mobility.
Next weeks session will not be as long as it has already been plotted and planned. Marks have been made on her body that have to stay there until her next session so they can line up the radiotherapy machines exactly as plotted. Next weeks session will be her final radiation treatment, a decision made by myself and Nicki due to the distress it put Jessica through in her fragile state. We could keep targeting different areas but to what gain, certainly not a gain of life and so we would prefer to remove the distress and keep her comfortable at home using pain relief medications.
Jessica is out of surgery now after successfully removing her line.
There was a bit of a complication when anaesthetising her. They used her line to administer the anaesthetic which is flushed weekly and has not had issue. This time however there was an issue and the pressure of the anaesthetic caused it to balloon up under her skin to quite a horrific size causing Jessica some serious discomfort. As soon as this happened the surgical team immediately administered her gas to send her to sleep and rushed her in to theatre to drain her neck and complete the line removal.
Nothing seems to go as planned at the moment and even the most routine of plans seem to throw up surprises. Thankfully Jessica is now recovering well and the surgical team are happy with her. We just now need to wait for a surgeon from plastics to come and take a look at her to make sure there is no serious damage to her skin tissue in her neck.
Looking at her now and how quickly her neck is losing it's redness and swelling I doubt there will be any problems and we should be discharged home soon.
She has a lot of pain in her neck from the earlier complications with the anaesthetic but the plastic surgeons have reviewed her and don't think there will be any lasting tissue damage. The pain there should begin to ease this next few days.
It has been a very long couple of days for Jessica with various things going on at different hospitals but tomorrow is a rest day!!!
Jessica is nice and chilled out now, extra pillows to elevate her and give her comfort. Tonight is her last night in her bedroom. We have come to the decision to move her bed into our bedroom and to butt it up to ours side by side so that she can spend her nights beside us.
Her sleeping patterns are all over the place due to her needing to sleep so much through the day and she can get quite distressed when she wakes alone in the middle of the night. This way she can cuddle up to me as much as she likes and if there are any issues over night then we are right beside her.
Jessica can not wait for the move into our bedroom tomorrow and for the extra daddy snuggles that will come with it!
This is the progression of one of her secondary tumours that used to only reside in her right shoulder but has now progressed massively down her arm.
Still even with all this she has a smile on her face
The smile on her face made all the work this morning to get her bed into our room worthwhile.
Safe to say she found a lot of comfort sleeping in our room. I loved waking up this morning and seeing her beautiful face as I opened my eyes.
It has been a horrible time since Friday with Jessica’s symptoms seemingly worsening daily. As you know Jessica had radiotherapy last Monday and by all accounts it seemed to have been giving her the comfort she needed and seemed to give her a bit more mobility. It was all looking good up until Friday night when she started to suffer from excruciating pain.
This last few days has been a constant battle to try and keep her pain at bay and give her some respite. All the tricks up our sleeves to help her manage the pain quickly disappearing and leaving us feeling helpless to her. One of the problems is that Jessica’s slow release morphine can only be increased in increments and so has taken a few days to try and match the dosage to the pain she is feeling.
Today we have had Jessica’s Macmillan nurse come to have a look at Jessica as she is not due to see her oncologist until this Thursday. Andrea, the Macmillan nurse, was quite shocked to see her progression and her visible pain. The tumours in her arm and leg do not seem to have responded to the radiotherapy and are visibly growing, her tumours in her abdomen also seem to be growing at an alarming rate.
What she is concerned of is the cancer spreading into Jessica’s bone marrow which she thinks it could possibly already have done and if not it may not long before it does spread to there. Once the cancer is in the bone marrow we know that the decline and eventual passing will happen very quickly. We will know if this is the case from ongoing blood tests that Jessica will have weekly.
Although we have been trying to prepare ourself for the eventual day that Jessica does leave our world and although we were told her life could now be measured in months, the statement that Andrea then told us has sent shivers through me…
It is of her many years experience that in her opinion that Jessica will NOT make it to Christmas this year.
As you can imagine this has left me and Nicki in absolute pieces. Christmas is only a little under nine weeks away and to hear that she most likely won’t even make this is devastating. It was only just over two weeks ago that we found out her life could be measured in months, to now hear we could have only weeks left with her is unthinkable.
I honestly cannot believe I am writing this, holding back the tears as I contemplate a life without my princess and knowing that this time will come soon.
Jessica’s pain relief is currently being reviewed and it may be changed to something that will settle her more and give her more comfort. This I welcome with open arms as seeing her writhe in agony and being unable to help is a living nightmare. The only comfort I have to give is to rub the areas of pain to try and assist her and thankfully this does seem to give her some comfort some of the time.
I would like to once again thank people for their amazing ongoing donations to Jessica’s Go Fund Me page and to all other ongoing fundraising. As much as we have not been able to get out as much as we would like with her and as much as the priority for the money continues to go on comforting Jessica in whatever way necessary, we now have to have in our minds the cost of our final goodbyes to her in the coming future. As such, any remaining money left after the treats and after she passes away will go to these final goodbyes. As much as this is something none of us want to think about, it is something that is a reality that we have to plan for and something that today has been brought to the forefront of our minds.
From a heartbroken daddy, please pray for Jessica and keep her in your thoughts.
October 28th, 2016
This is an insight into our day yesterday, visiting RMCH with Jessica for the final time.
Yesterday was a highly emotional day as we visited Royal Manchester Children’s Hospital to visit Dr. Anthony Penn, Jessica’s Oncologist for this last thirteen months, for a routine clinic appointment to assess Jessica’s wellbeing.
As we set off in the car we knew that the day would not be a good one. Very early into the one hour journey to the hospital Jessica began to feel very uncomfortable in her car seat, her seatbelt now pushing against her swelling abdominal tumours. It was a relief to finally arrive and get her out of the car and settled into her buggy away from the constriction of the seat belt.
Upon arrival and whilst sat in the oncology waiting room I could not help but look on in jealousy of families whose children are currently doing so well in their fights against other variations of this disease. I would do absolutely anything to be in their position right now and although I know the fight is far from over for these others they still have an element of hope I wish I could still have. It was hard sitting in the waiting room and speaking to some of the friends we have made, parents of other children living this hell, and seeing them holding back the tears on hearing the prognosis of Jessica.
Finally after what seemed like an eternity of waiting we were called in to see Anthony. By this point Jessica had settled and was fast asleep in her buggy as I wheeled her into his office. Anthony was visibly shocked at the image of Jessica that now sat in front of him and commented how only two weeks ago she had walked out of his office after his examination. This was a stark contrast to the girl we presented him with today, now sat slumped in her buggy, her breathing laboured. On previous examinations Jessica would fall into an uncontrollable fit of laughter due to his ticklish fingers, this time however the only sound to be heard was a whimper of pain as he lifted her top to examine her.
I have a lot of time for Dr. Penn, he has been amazing throughout this journey, highly supportive and informative whilst being honestly blunt when and where needed. After examining her he asked us if we still wanted to go ahead with our desired organ/tissue donation to medical research. Our answer still remains a yes. If we can help in anyway to prevent other families from going through what we have been through then that would be of some comfort to us. I signed the consent forms for a post mortem to allow this research and I asked how this will be carried out. Anthony has never been in this position before and so has some questions of his own before answering us fully but it is of his belief that Jessica will have to return to RMCH for the post mortem after her passing. Her body will then be returned to us to our desired location to allow our mourning before our final goodbyes.
Dr. Penn then moved the conversation onto what we needed to know about drugs that will be provided to us at home to give her comfort. These will now include pain relief that can be injected in to her and also a form of sedative that will work instantaneously to settle her whilst we await medical help.
The final part of the conversation was about what amount of time he thinks we now have with Jessica. It is of his opinion that with the progression that we have now seen that Jessica has no more than A FEW WEEKS LEFT TO LIVE!!!
This news felt like my heart was ripped out of my chest while someone sucked the air from my lungs. It feels like at every examination her life expectancy is reduced more and more. Two weeks ago we were told her life expectancy could now be measured in months, at the beginning of the week we were told that Jessica would most likely not make it to Christmas which is only eight weeks away, now yesterday this has now changed once again to an estimate of us only having a few weeks left with her.
I felt numb as we said our goodbyes to Anthony. It was actually the last time he will see Jessica as he agrees that the journey is now too far for Jessica to manage and he wants us to spend as much time at home as is possible. As we walked along the corridor to the exit I could not help but notice the end of treatment bell hanging from the corridor wall and I felt a pang of sadness. The bell is rung by all those that have finished treatment and is something that all parents and children look forward to when on this journey. It is a moment I have dreamed of and I have watched on in envy as others have rung it with a massive smile across their faces. Today I walked past it knowing that although Jessica’s treatment has ended it is not with the celebration that those who have rung it previously have had.
As I have said in the above, Jessica now most likely only has a few weeks left to live. We are extremely grateful to all of you for your support, your friendship, your donations and your prayers. We know that a lot of people on here know Jessica personally but we ask that if you would like to see her, if possible you attend her party this coming Sunday. We are now going to give Jessica a couple of days rest to ready her for her big day this weekend. I hope that many of you can come and enjoy the day with us, the details of which are on an event on this page.
After the party this Sunday we will ask that myself and Nicki, Jessica and James are given the time that we need in relative privacy. There may be some opportunity for people to visit Jessica and ourselves but this will be reserved for only our closest of family and friends.
I have been trying to prepare myself for what lies ahead in this coming weeks but this is proving impossible. I am not ready to let my princess go but I know it is what is best for her, a life of this pain is not a life of happiness. All I can now do is give her comfort and support and help her find her way to the gates of heaven.
I will endeavour to update the page when time allows but our time will primarily be focused on spending time with Jessica, literally treating each day like it may be her last.
Thank you in advance for your understanding of our privacy.
From a heartbroken daddy.
I could try and use a thousand words to describe this image that we as parents are confronted with on a daily basis but these words would fall short of truly depicting the sight we see. With this photo I do not mean to offend or upset, I do mean however to educate and shock those that see it in it’s context. Perhaps by seeing this photo people not in our position will be made aware of the darkness that is childhood cancer, perhaps these same people may be able to do something about it so that in the future no child has to suffer this pain, so that no parent has to bear witness to their own flesh and blood deteriorating daily.
The only apologies I offer are to those that know Jessica, I understand that this photo is hard to see and even harder to absorb. To those that do not know Jessica I offer no apologies, this is what cancer does to a child in their final weeks and days!!! Before her diagnosis I was one of those ignorant to the darkness of childhood cancer, not truly appreciating the hell that it brings. It would never happen to us! Now I give childhood cancer the respect it deserves, seeing too many children suffering this same fate and watching families torn apart.
If this photograph only serves as a purpose to make people think twice about this evil and put into perspective what it does to a child then it has achieved its purpose. Research needs to be done, cures need to be found, too long now has this been allowed to happen.
Please I beg of you, as a heartbroken father, it is too late for my daughter, but childhood cancer needs to be cured. No family should have to go through this hell.
