July, 2016

Stories on this and other pages (by month) are taken from the postings on the Facebook Blog, 'Jessica Whelan, a fight against neuroblastoma', by Jessica's dad, Andy, and her mum Nicki. Click below for link to the Facebook site.
July 1st, 2016

This is a picture of Jessica today after her scans. To me this is a picture of health, happiness and fighting spirit, doing well in her battle against this awful disease.
This evening however my world was once again rocked to the core, a phone call from Jessica's oncologist...

Jessica is now no longer responding to this, her second clinical trial, and now for the first time in nine months of treatment, her tumours have now shown signs of growth. This was such a shock to hear, again the results not expected so soon and this time definitely not what we were expecting. We were fully expectant to hear that the scans at least showed a stable and none growing tumour, the same results as the last scan, however we were nowhere near prepared to hear that it was once again growing.

I feel physically sick as I write this, my head throbbing, Jessica now in bed, laughing and playing before bed as if nothing was wrong with her.

I cannot put this picture of Jessica alongside the news we have just had, they just do not match!!! She is doing so well, going from strength to strength, gaining weight and growing her beautiful hair back so quickly. Sadly for us however is that her outward appearance is a false sense of security, a smoke screen of what hides beneath. Her primary tumour in her abdomen and one of the secondary sites, her right shoulder, have began to show the signs of growth we were praying against.

Jessica has now been removed from her latest clinical trial, four months into the six month trial we are now once more looking at alternative treatments. Her oncologist has this evening informed us of a colleague of his based in London, an apparent expert in this field, who may be able to offer another treatment to target this cancer. The paperwork and all the motions seem to be in place to make this happen but we are having a meeting in just over a week to confirm this. In the mean time, as one hundred miles per hour it may seem, we are re-starting fund raising for Jessica. We are eternally grateful of past fund raising efforts in honour of Jessica to give her treats and much needed days out. We now need to try and raise funds to allow us to cover living and travel costs for future treatment, especially with the likelihood of treatment in London. I will most likely need to take time from work once again, unpaid with little help from the government to cover our costs. I would rather not have to ask this massive favour of you all, you have all been amazing for Jessica up to now in numerous ways and we are forever in your debt. We are now running out of treatment options for our beautiful princess but I will do anything to try and keep that smile on her face for as long as I possibly can.
Thank you to everyone who has donated. It really does mean the world to us as a family. Thank you from the bottom of our heart.

I forgot to include and would like to add that the treatment would be provided by the NHS and this is not a bid to raise money for treatment. This is purely to help us with living costs and keeping this beautiful smile on her face as long as I can. My head is all over right now and I can not think straight xx

July 2nd, 2016

I just want to say a massive thank you to everyone for your messages of support, kind words and donations. We are overwhelmed by the amount of messages we have received and as yet have not replied to all due to the sheer amount. We are also overwhelmed and humbled by the fundraising efforts in such a short space of time, not just via the Just Giving page but also in messages received to organise events in Jessica's name.

Yesterday was an extremely emotional day that has left us sleep deprived and exhausted today. It was 4am before I finally got some much needed sleep and I was the awoke by Jessica at 7am, creeping to my side of the bed to pinch my Terry's chocolate orange!!! The look on her face was priceless as I raised my head to ask her what she was doing. Of course I couldn't refuse her to have some, despite her cheek, and both me and Jessica cuddled up in bed eating chocolate orange before breakfast...naughty daddy!!! Cuddles like that I am learning to cherish more than ever. Fortunately for me Jessica has always been a daddy's girl and any morning that I am not at work she takes the opportunity to creep into my side of the bed for big snuggles.

Today is a much needed quiet family day, this week has been long with Jessica's scan appointments. Tonight though we have some close friends coming around to keep us company and a promise from them to take our minds off life for a few hours. I feel it is much needed and also feel lucky for having such a great support network of friends and family.

Once again thank you all so much for everything, it means so much to us as a family.

July 4th, 2016
This afternoon called out for some much needed fresh air and a bit of a head clear for me and Nicki. Jessica and James had great fun until Jessica's legs became tired and we had to head back home. She did fantastic though, walking a great distance before needing me to carry her home.

Worryingly for us as parents, Jessica has this last twenty-four hours started to develop pain in her tummy, something she has not had to deal with for around six months. I have contacted Royal Manchester Childrens Hospital as although we have pain relief already at home, I am desperate to find the root cause of this new found pain that has twice left Jessica in tears today and with a horrific headache. It all seems too coincidental with the latest scan results and therefore I am not prepared to wait for her next appointment and instead I am taking her in for a check-up tomorrow morning. It is not even like Jessica is aware of what is going on or of the latest results or what they even mean and so I know she in not playing on it. The pain has genuinely brought her to tears and it is heartbreaking to see and a reminder of times past before she was doing so well. Her eating has also gone backwards today, struggling to eat much at all but I am putting this down to the pain she has been in. Hopefully the doctors will be able to put light to this latest revelation tomorrow and I am praying it is nothing too sinister.

Thankfully between the bouts of pain that we manage with the pain relief she is quite active and lively as this countryside walk showed us. Hopefully tomorrows hospital visit is a short one that will put our minds at ease and we can get home for some more fun.
Well today's headaches and tummy aches have turned into a temperature of 39.0 degrees. Me and Jessica set off to Royal Blackburn Hospital half an hour ago and she is just having observations and antibiotics. It means a minimum of forty-eight hours staying here now until blood cultures come back. This is her first over night stay since February!

July 5th, 2016

Jessica is feeling a little bit better today, although still having some headaches and tummy ache it is nowhere near as painful as yesterday's. Thankfully she has been sick several times in the last twelve hours, I say thankfully as this points more to a viral infection than yesterday's concern regarding her tumours growth.

It was a rather unsettled night especially by the time antibiotics were administered and the last of the doctors left us alone. Jessica has been catching up on this sleep today whilst I look on enviously. Between the little naps Jessica has been dancing around her isolation room and colouring pictures for the nurses. 

If the blood cultures come back also pointing to a viral infection then Jessica may be allowed home at some point on Thursday. Her temperature has come down over night and has so far stayed down so this would also allow us home.
Getting that fighting spirit back this afternoon! She has been dancing away and punching daddy!!! Love to hear that laugh.

Click pic for video

At the beginning of this year depression was setting in and it took a lot to try and rise above to enable me to stay strong for Jessica. Not wanting to ever show weakness in front of Jessica I used to escape for an hour or two for a walk in the local countryside. One of my favourite spots to reflect was this waterfall above Jack House in the pine forest. Unbeknown to me, a picture I took whilst there one day was replicated by a very close family friend, her intention to present it to me. With recent results forthcoming, Heather informed me of this but now wants to auction this fantastic replication of my photo to help raise funds for Jessica. 

Please  below to read her own words.
Comment from Heather:

This painting was inspired by a photograph taken by Andy (Jessica’s Daddy) whose family are close friends of ours. 
On this particular day, Andy felt he just needed to take himself off with his dog as company for some much needed time from the stress and heartache of Jessica’s illness. 
On reading Andy’s blog and seeing the photograph, I felt I wanted to paint it and, if it turned out okay, to give it to Andy as a gift. In his blog, Andy referred to the this particular local beauty spot as an escape and a time to reflect in the tranquillity of the countryside which hopefully would give him the strength to focus on the long unknown road ahead of treatment for Jessica who last October was diagnosed with stage 4 neuroblastoma.

I do not claim to be an artist in any way – I do this purely as a hobby (and a very recent one at that!). After many hours of painstakingly painting pebbles and trying to get the waterfall right, my work was done. All that remained was to frame it and hand it over. In the meantime however, I learned the latest news that Jessica’s next phase of treatment was to be in London – I liaised with Andy and we both agreed that to auction the painting was a great idea to raise more funds to support the family and gain some much needed expenses for travelling and accommodation.

I have named the painting ‘My Escape’ – Andy found peace and tranquillity in his surroundings and managed to regain some of his strength and resilience in order to continue his journey of being a loving Dad to Jessica and her little brother James and a supportive partner to Nicki. I am truly hoping that this small gesture will go some way to alleviating some of the financial stress for Andy and his family whilst they battle on with the hospital visits, travelling and time away from the family home.

I very much look forward to receive your bids which will also coincide with a coffee morning to be held on 9th July – all bidders will be kept informed of progress and the closing of bids will take place on Saturday evening.

Heather xx

                This is the picture I took on that day that Heather has painted x

July 6th, 2016

Jessica is now home!!! A day earlier than she should be as blood cultures are not yet back but doctors are pretty confident that it was just a viral infection and due to her wellbeing are happy for her to go home. We will receive news of the blood cultures tomorrow but are doubtful of it showing anything at all now. Jessica has suffered no sickness since yesterday dinner time and no further temperatures.

Thankfully her headaches and tummy aches have now subsided and were most likely caused by the virus rather than the feared tumour related pain. Thank you to everyone for your kinds words and messages of support as well as offers of assistance. They are greatly appreciated by us as a family.

Getting home this afternoon showed us just how much Jessica had missed James and vice-versa, both of them running to one another to give kisses and cuddles and enjoying playing together again. Time now for a relaxing couple of days as we are all shattered from the events of the last few days.

July 9th, 2016
A fantastic morning for Jessica! 

A few weeks ago Jessica was invited to join the Pop Up Princesses for their bi-annual promotional photo shoot. Today was the date booked and the poor weather was not going to get in the way of Jessica meeting them all for this fantastic opportunity. The photographer at the event is going to pass on any images taken within the next week or two for us to share with you. I did however manage to get a sneaky pic during todays visit. 

Jessica absolutely loved it and it sure did tire her out, almost falling asleep on the way home and then having a nap after dinner. Thank you so much once again to the Pop Up Princesses for the invite, you have made a little girl very happy today!

July 12th, 2016

Really anxious and nervous about tomorrows meeting with Jessica's oncologist, so many questions to ask and I know there will be a lot of information to absorb.

Normally at meetings like this we would go on our own without Jessica as we need to absorb as much information as possible without distraction and of course we do not want to show any emotion directly in front of Jessica. Tomorrow however we need to take Jessica with us as she is suffering terribly with her right shoulder, a site of one of the main secondary tumours. She started in extreme pain on Saturday and we have had to constantly have her on pain relief, including fast acting morphine to try and manage this.

We are hopeful that she has just banged it somewhere and due to the metastatic disease causing weakness in the joint, possibly a small fracture. I say we are hopeful as this would be the lesser of the two evils as we know from her scans that this is one of the areas that has shown some growth. Jessica will have an xray tomorrow before our meeting with the oncologist so that he will be able to see the results and inform us of the cause and best solution for this new found pain.

We would like to say a massive thank you to Heather, a close family friend of ours who auctioned off her painting and held a coffee and cake day for Jessica on Saturday, so far the total raised from this is an amazing £581!!! We are overwhelmed and humbled by the support the event received.

We would also like to say thank you once again for the donations to Jessica's Just Giving page, there have been some very generous donations that will help us so much as a family, wherever this future treatment takes us.

Thank you also to those that have contacted us either via this page or on our personal profiles to arrange fundraising for Jessica. All your efforts are very much appreciated.

July 14th, 2016
We went to see Jessica's oncologist yesterday and we now have a plan regarding the next stage of treatment. There is however a lot of information and as such we will update you later on regarding the next step.

Rather shockingly for us is how quickly Jessica has deteriorated this last seventy-two hours. She is in excruciating pain with her tummy and shoulder to the point she is now on slow releasing morphine twice daily with fast acting morphine as a top up when required alongside regular paracetemol. She has basically stopped eating and will only eat some small amounts of certain foods. All she has done so far today is lay down in my armchair and watch her tablet, the slightest movement causing her great discomfort. We have also been on temperature watch this morning due to some high temperatures but thankfully these have dropped again.

It is heartbreaking to witness and takes us back to last September when she was first diagnosed. I pray that she can start this much needed next treatment as soon as is possible as she needs it so much.
July 14th, 2016
This was not how I wanted today to end. Jessica has had to be blue lighted over to Royal Manchester Children's hospital in unbearable pain and now with a temperature of 39.5 degrees. The morphine we have been giving her has hardly touched her today and she has not once moved from the arm chair. It's breaking me to see her like this, I am praying RMCH can give her the comfort that she is desperate for.

Jessica is being admitted to undergo observations, pain relief management and any necessary scans. Her lymph nodes, especially around her pelvic region are very swollen and quite visible, causing her a lot of pain and discomfort. She will undergo an ultrasound of her abdomen tomorrow to see if there are any hidden issues such as other swollen lymph nodes.

The concern for us right now is the root cause of the pain and whether the primary tumour has shown significant growth since her scans two weeks ago. She is in the best place right now where her pain can be managed more effectively, via intravenous morphine if required, and also where they can monitor her for any signs of significant growth.

Thank you for all your messages, this really is a horrendous disease and we are thankful of all your support xxx

July 15th, 2016

Thankfully Jessica had a more settled night last night, only waking once for the toilet. Today however she has been very uncomfortable, finding and sticking to certain positions in bed to try and manage her pain. She has had an increase in morphine but due to regular top ups of fast acting morphine it looks like they may increase her dosage once again.

It's horrible to see her like this, feeling like we are back to September and first diagnosis. She has returned back to her daddy's girl ways, more often than not only allowing me to comfort her which is distressing for Nicki as she just wants to wrap her arms around her and make her feel better.

Jessica has had some xrays of her abdomen today to investigate the pain in her abdomen and what further action is required. We know the pain is disease related but are also looking into other causes such as possible infection that could be worsening it.

I will be going to Christie's at the beginning of next week, even possibly without Jessica if she is still unwell, to discuss the next stage of treatment. This next stage of treatment is very both very daunting and detailed and I wouldn't do it justice in this status so I will write a separate post later to keep you all up to date.

The aim at the moment is to make her comfortable and as pain free as possible until this next treatment takes place. We have both had numerous messages to our personal profiles and to this page alike. We will endeavour to read and respond where necessary when our heads are in a better place.

At the moment both myself and Nicki are struggling to come to terms with recent events and we are both in a dark place right now. We are staying strong for each other and we are both very appreciative of your support.

Jessica's next treatment - MIBG therapy

At the beginning of next week we will go and meet a specialist at Christie's. This meeting will be used to discuss the upcoming treatment in full detail as at the moment we still have some unknowns.

Here is roughly what we do kind of know and expect:

The treatment is radiotherapy via injection. We know that Jessica's tumours respond to the isotope used in the injection and the isotope is attracted to the cancerous cells and sticks to them. We know this as Jessica has had numerous injections of MIBG for scans. This injection is different however as the dose of radiation given to her is multiplied massively. Jessica's disease is so widespread that external targeted radiotherapy beams will not offer the same level of treatment that this internal treatment will hopefully achieve.

The radiation will be infused over the course of forty-five minutes to an hour. Jessica will have a catheter during her stay as the radiation is rid from the body via urine and the catheter is used so that the radiation in the urine does not sit in her bladder and cause any issues.

Once Jessica has the infusion she will be in isolation for between four and seven days as she will herself be radioactive and a danger to anyone who comes into contact with her. During this isolation period I will stay with Jessica in a lead lined room, myself separated from her via lead screens. I will be her main care-giver, and I will be given a radiation monitor that I must wear if I pass the lead screens, as well as apron and gloves etc. In the first twenty-four to forty-eight hours my contact will be strictly limited and monitored, I will need to sign a consent form to acknowledge the danger and risk I am taking by being near her as well as accepting responsibility for my own safety. I will only be allowed close contact for a few minutes every few hours and even then I will not be allowed much bodily contact, I will be allowed to wear gloves and hold her hand briefly but this will also have to be done from behind a lead screen to shield myself from as much radiation as is possible. This is going to be the hardest part for both me and Jessica, she loves daddy's cuddles and to not be able to have those will be heartbreaking. Once the radiation levels reduce my time with Jessica will be increased until she is at a safe level for full contact. Nicki will be unable to visit during this time of isolation as in being in contact with Jessica will preclude her from being able to look after James at home. Obviously this is going to be a hellish week for us as a family but is a necessary treatment to give Jessica the comfort she needs and quality of living in the time of life that it will hopefully buy her.

One of the biggest side effects of this treatment is the effect on her bone marrow and blood counts, fortunately we have already harvested Jessica's stem cells a few months ago and so if there is any irreparable damage we can dip into this backup to give her back what she needs.

We have numerous questions that we still need to ask and even some of the above may change slightly in the coming weeks but that is the basic outline of what is expected. Our meeting at the beginning of next week will give us those answers and hopefully we will then start the treatment with two weeks after that.

As an addition, our original plan to go to London has had to be changed with recent developments and our only realistic option in our given time frame is to go with the above treatment. The funds that have already been raised recently will be a massive help to us due to my now expected prolonged period of time from work due to this treatment.

July 16th, 2016

What a difference seven days can make! Saturday of last weekend Jessica was enjoying a photo shoot with the Pop Up Princesses, full of energy and running around. Even up until Wednesday, although struggling with pain, she was still active and her normal self.

She is still in some discomfort now but nowhere near the amount that she has been this last few days. Her morphine levels are now getting to a level to comfort her as a whole and any possible infection seems to be disappearing.

She has been up and about a little more today, only getting back in bed when her pain requires or when she needs to rest. The highlight of her day today has been meeting one of her favourite super heroes, Iron Man!!!

Jessica isn't home just yet, she recorded a temperature of 38 degrees over night and so she is being kept in until at least tomorrow. Her pain is a lot more manageable now on the higher doses of slow release morphine and she now only needs occasional fast acting morphine to keep her comfortable. She has however developed an expensive taste for Dominoes pizza and is preferring this much more than hospital food. I am not bothered though as it is great to see her actually eating again.

She was delighted this afternoon as I took over her little brother who she has not seen since Thursday. I also took her over a surprise of a LEGO Friends Horse and Vets truck and built that with her, three of her passions rolled into one, LEGO, horses and making better. When she does get home she has one more surprise, a LEGO Friends stable. Hopefully these will raise her spirits a little bit.

Hopefully she will be home tomorrow, her blood cultures are back showing no signs of infection. We just need to find out if we are at Christie's tomorrow and if so what time and where.

July 18th, 2016
Finally back home!!! A busy morning getting discharged from RMCH before going to Christie's to meet the Nuclear physicist, specialist and family care team. We now have all the answers we needed and her treatment has been pencilled in to start Wednesday 3rd August.

Jessica is worn out, falling asleep in the car on our way home. She has briefly played with her LEGO, the surprise bringing a beaming smile to her face. Now she is resting again, watching her tablet computer whilst curled up in my armchair.
July 18th, 2016
Jessica is a lot happier now that she is home and she can play with her LEGO properly, especially the latest additions! 

She is still in some pain but we should be able to manage that here at home. We will be having a few days rest now as a minimum and hopefully that will also work wonders.

July 19th, 2016

MIBG therapy and what we now know.

Yesterday we met with the specialists and nuclear physicists involved in the next stage of Jessica's treatment. Most of the information we were provided with we did already know and we have already published on Jessica's page previously.

What we have now found out after a home risk assessment is that once Jessica is allowed home, after between four and seven days of hospitalisation, she will not be allowed any contact with her little brother James, in fact he can not even be within the same house. Therefore when me and Jessica do finally get home and out of isolation, Nicki and James will have to move out of the family home for around a week until her radiation levels are deemed safe.

Although she is allowed home I will still not be allowed prolonged physical contact so even when we are home there are to be no cuddles or snuggles whilst watching television. I fear this will hit Jessica most in a morning when she loves to come and sneak into our bedroom for morning cuddles.

I am praying that her pain is more manageable by then as at the moment when she is in pain she often loves tummy rubs to relieve her pain and cuddles on my knee to comfort her. It will be two weeks after her injection that we will be able to resume some sort of normality.

Although the treatment is quite daunting I can not wait to get it started to try and combat these growing tumours. I have no doubt that this will be the longest two weeks of our lives so far as we wait to actually commence the treatment, seeing her battle daily is a constant reminder of the uphill struggle she is continuing to face.

Today marks twelve months to the day that this hellish journey started. Here are my own words of that awful day..... WARNING ..... it's a long one!

Around this time, on this date, twelve months ago, I arrived at Royal Blackburn Hospital following what felt like the longest two hour journey north. Two hours previously I had received a phone call from Nicki, this was the start of this twelve month rollercoaster.....

At the time I was working away in Birmingham and me and my work mates had not long arrived back to our home from home. Dinner was being prepared and I was taking the time to relax on my bed whilst Brandon hogged my PS4 playing his way through GTA V. My phone rang and seeing the display I saw it was Nicki, being this time of evening I assumed she was most likely ringing me to allow me to say good night to Jessica as she did most nights. This phone call however was not the usual happy greeting followed by Jessica's tired voice, this phone call had a sound of worry in Nicki's voice from the off. Listening to Nicki recall a call she had herself received, listening intently as she broke down whilst mentioning the word cancer, my whole world began to implode.

How did we get to this phone call...

Jessica had been suffering from a sore and inflamed shoulder for a few weeks following a fall. She had already visited A&E who had no concern and said it was probably bruised or a tiny fracture but due to Jessica's uncooperative mood decided best not to X-ray her but see how she went on. The weekend of the 15th of July she also started with an eye infection which seemed to worsen as the weekend progressed and so I asked Nicki to pop her down to the walk-in centre whilst I returned back to Birmingham for the week and whilst there having her eye looked at, to ask again about Jessica's again inflamed shoulder. On checking her over and administering antibiotic eye drops a x-ray appointment was made for the Wednesday morning to check if there was indeed a fracture.

Nicki took Jessica to the appointment on the Wednesday and, due to it being a scheduled x-ray, was told to expect the results from her GP the following day. However the phone call from the GP did not come the next day, it came later the same day asking Nicki to go to hospital as a follow up was required. Nicki obviously did not hesitate to make her way over to Blackburn to find out what was up and what had been revealed but was in no way expecting the conversation that was about to unfold. On arrival Nicki and Jessica were taken to one side to run through the findings of the x-ray and without warning the doctor dropped the "C" word. The doctor had thought that Nicki had already been briefed and pre-warned via the phone call from the GP surgery but this was not the case and this was the first mention of the word cancer that Nicki had heard.

Back to the phone call...

Naturally Nicki was beside herself by the time she rang me, events unfolding a million miles an hour, I immediately hung up and after composing myself went downstairs to see my boss and informed him I had to get home. My mind was racing as I quickly packed my bags and left the house, taking one of the work vans to get me home, a 120 mile journey ahead. The journey seemed to last an eternity, in fact only two hours or so but feeling at least double. I was trying to piece together bits of information from Nicki and ringing my mum, Sharon, to try to inform her of events and to try and find comfort in her voice.

Finally arriving at Blackburn hospital and finding where they were I found comfort in Jessica's outward wellness and quickly sought the doctor to get the full findings. I was told that the radiographer who had reviewed Jessica's xrays had immediately spotted what he thought to be cancer and the Blackburn team were now liaising with specialists in Manchester and Birmingham to either prove or disprove these findings. My whole world was crumbling down around me as I stood there and hung onto every word she said.

Moving on...

In the next few days to a week we were informed that from the x-ray images that had been taken it was highly unlikely to be anything as sinister as cancer and that Jessica would be treated for Osteomyelitis, an infection of the bone, most likely caused by her previous fall. All of a sudden there was a sense of relief, a stay in hospital was required to administer intravenous antibiotics but she would be OK, nothing further to worry us.

Twelve months on we now know that this was not the case at all, ten weeks after this initial scare she would be diagnosed with high risk stage 4 neuroblastoma. It has been a hellish twelve months, a rollercoaster of a journey and we are still not at the end of this nightmare ride.

Thank you to everyone who has so far supported us through this journey, I am eternally grateful to have you as friends.

July 20th, 2016

This last three weeks seems to have been a downward spiral. Since the phone call regarding Jessica's latest results showing tumour growth we have had two periods of hospital stay, something Jessica had not previously had since February, now we are once again on temperature watch!!! We have not been home forty-eight hours since she was allowed home but here we are again monitoring temperatures and in fear that Jessica will once again be admitted if these do not stabilise soon!!!

Click above pic for link

Depending on how Jessica is this week we have two representatives from Cancer Research coming to pay Jessica a visit on Friday. If all is well they may be doing some filming as part of their Stand Up To Cancer campaign. I have been speaking to one of these representatives for a few weeks and so far all attempts at meeting have been thwarted by hospital stays etc. Me and Nicki will today be receiving a phone call from a psychologist from Channel 4 as part of their duty of care to make sure that we are OK emotionally for this film making.

We would love to be a part of this to try and raise awareness of what this awful disease means to families. I am not normally one to like being filmed etc, preferring to be on the other side of the camera but if our participation can help raise awareness as well as vital money for research then we will gladly take part.

I do not not know if and how any filming will be used but I do know they have a live entertainment night being aired on Channel 4 on 21st October. Here is to hoping that this night is a big success as so many families are affected by this awful illness and so much money is needed to research further treatments.

As we posted earlier we were on temperature watch, this has not changed much, most of the day Jessica being at a good temperature but occasionally spiking up but this seems to be at the times she is in most pain.

We had a visit from our Macmillan nurse at lunch time and she was also concerned with Jessica and her pain levels. As such we have now had to raise her slow release morphine once again. It is now at a level that she has not before had such is her pain at the moment. Alongside this increased level of morphine she is also on regular paracetemol and fast acting morphine.

It is heartbreaking to see her like this and she has slept much of the day, again eating very little. We are going to review how Jessica is on this new higher dose of morphine but we may also be making a trip to RMCH tomorrow or Friday to get her checked over.

Due to her not eating or eating very little me and Nicki are in discussions as to whether Jessica will once more need an NG tube so that we can feed her and at least take that worry away from her. An NG tube will also allow us to once again manage her regular medication even when she sleeps and without the need to wake her. It is something we really do not want her to need but with the way she currently is we may have no option and it could well be the best thing for her in her current situation.

July 21st, 2016

You would not believe the difference in Jessica today on her new higher dose of morphine. She is the polar opposite of where she was yesterday, spending large portions of today playing.

So far we have today had a making session where Jessica made one of her friends a Birthday present and just now both me and her have been playing with LEGO, mending poorly horses. It always amazes me at such a young age what comprehension she has of all things medical. Jessica decided that one of the horses had broken its leg and after doing observations she decided that an x-ray was needed followed by a cast. All this from a girl that has never had a cast before ha ha.

It really is great to see her playing like this and we have both been putting on funny voices whilst playing with all her different LEGO figures.

We are going to go to RMCH (Royal Manchester Children's Hospital) tomorrow to see one of the dieticians and to have a NG tube put back in, Jessica deciding that this would also be for the best so that she can get the energy that needs.

I cannot begin to describe how much happiness these Princesses bring to Jessica. They all do such an amazing job and are all so talented!

A couple of weekends ago all the princesses of Pop Up Princesses pulled together to give these special little girls a magical day!

We hand picked these children all for different reasons and felt they deserved a day of enchantment. Amongst these beautiful princesses, we have Jessica who is staying strong and battling a horrendous illness, we have Maisie who was supposed to visit Disney Land a few weeks ago and due to illness couldn't and we have Lucia, Thea and Eleanor whose mummies work so unbelievably hard that we felt they deserved this treat too. So Memory Boutique PhotographyI Am Yasin Photography and us Prinnys got together to make some dreams come true.

Keep your eye on the page for more gorgeous snaps from this fantastic day 

July 22nd
My beautiful princess has had an NG tube put in this morning. She was such a brave girl with only a few tears during its insertion. We can now begin to once again feed her through this tube whilst still encouraging her to eat when she feels up to it. The biggest barrier to her eating at the moment is the pain that she is getting, especially the pain in her stomach. We will now be able to administer pain relief again while she sleeps, this helping her by her not going for a long period without the pain relief if she is asleep when it is due.

We have once again upped the dosage of her slow release morphine as we are just ironing out any little niggles she is having and we have also increased the dosage of the quick release morphine that she is able to have.

All in all she is a lot brighter these last two days, only a few occurrences of really bad pain and these quickly managed. This has meant she is able to move around a lot easier and is now able to play more often than lie down.
                                                           July 29th, 2016

We just want to say a massive thank you to Andy & Katie of Burnley Police for taking time to come and visit Jessica this morning. As a team they have been raising money for Jessica by means of a swear box and all I can say is by the amount they have raised in two weeks, they are a potty mouthed lot ha ha.

They also brought Jessica her own uniform and handcuffs which she loves and she is now led on the settee dressed as a police officer whilst watching her tablet.

July 31st, 2016

Starting to get nervous about this coming Wednesday now. It has been 30 days since receiving the news that Jessic's tumours are now growing and it has been a hellish time. The pain and suffering she has had to deal with this last 30 days I would not wish on anyone, let lone a child with no comprehension of why she is suffering.

I have started to explain to Jessica what this treatment involves, the isolation and the magic medicine that makes her better meaning we cannot have cuddles as that same medicine can make me poorly. She does seem to understand a lot of it and is taking a lot of the conversations in her stride however only time will tell how she will actually deal with this.

It is going to be a busy couple of days getting together last bits for hospital and saying goodbye to loved ones that we will not see during this treatment.