March 2nd, 2016
Heart warming moment earlier this morning as Jessica stood looking out of the window softly singing Frozen's "Do you want to build a snowman".
Twenty-four hours from now me and Nicki will be sat in front of Jessica's Oncologist finding out the results of her scans and seeing where we go from here with her treatment. It has been a stressful and worrying week as the day gets closer and now we are counting down hours it is even more unbearable.
As you can understand even the "good news" still holds a lot of danger and uncertainty and we would be hearing of side effects and dangers of future treatment. We may be slow to respond and update people as we ourselves come to terms with what the future holds.
Fingers, toes and everything else crossed!
March 4th, 2016
A fantastic and much needed morning of fun in the snow.
Jessica woke us up this morning with a beaming smile exclaiming it was snowing. Thankfully today it kept snowing and didn't melt quite as quickly as the other day. We all managed to get out as a family and had great fun on the field throwing snowballs, making snow angels and building a snowman. Jessica singing songs from Frozen as she played and built her snowman, complaining that we had run out of carrots for its nose, naughty daddy for not being prepared for a snow storm.
This afternoon her best friend Orla has also come to visit, much to the surprise of Jessica and it has been a great boost for her. Beteween them they have baked cakes and trashed Jessica's bedroom playing with Barbie.
Jessica is worn out now and I think it is time for much needed cuddles whilst watching movies.
Yesterday, 3rd March, is now another date we as a family will probably never forget. Yesterday was the day we sat in front of Jessica's Oncologist with hope and determination. Yesterday was the day that we sat devastated by the news that the scan results were not the news we wanted.
The secondary cancer still remains, it has reduced a bit but nowhere near the amount that was needed. Jessica can now no longer stay on the clinical trial that she has been on since September and we must now make a decision as to put her on a different clinical trial.
The previous clinical trial offered her around a fifty percent chance of surviving this cruel and horrible disease, the new clinical trial however does not offer anywhere near these odds. Jessica cannot stay on the previous clinical trial as it involves surgery and high dose chemotherapy, stages of treatment that Jessica is not ready for due to this remaining metastatic disease. Her oncologist has been open and honest with us and has advised us that although there is still a slim chance of survival with this new trial, we are now most likely looking at prolonging life with as good a quality as possible.
Our world was rocked by this news, Nicki and myself are both in pieces but staying strong for Jessica. We are clinging on to the hope that there is a chance of survival, however slim it may be, whilst also preparing ourselves for the reality of the statistics, enjoying life as best as is possible whilst still maintaining treatment that will give her a good quality of life.
We were in tears as we spoke to her oncologist about what the future holds and about the type of life we want to be able to offer Jessica. Talking to him about possibilities of making time for holidays to create much needed distractions and happy memories. Further talk of referrals to charities such as Make-A-Wish, charities I never before really considered needing, bringing home further the reality of where we are now at.
We go back to hospital on Monday to sign consent forms and to start Jessica's stem cell harvest. Once forms are signed we can enter onto the new clinical trial and start a new chemotherapy as soon as possible.
Me and Nicki would like to thank everyone for messages asking about yesterdays results, many we haven't replied to whilst we consider this latest news. We have spent the last twenty-four hours letting this news sink in whilst speaking to family and friends. It still has not hit us fully the true weight of this news and have had support offered to us and had our Macmillan nurse come visit us at home today.
We have however tried to make the most of todays weather to create a distraction, playing in the snow and baking cakes and spending time with friends.
March 6th, 2016
Jessica has had her nails done ready for the week ahead. Back to hospital tomorrow to sign consent forms and start stem cell harvest. We will also meet Jessica's oncologist and Macmillan nurse again to talk through once again the upcoming treatment.
March 8th, 2016One year ago today, Jessica showing off her new hair cut. Only four months later Jessica began to show signs of the diagnosis we now have.
Her Hickman line is very positional and only bleeds back in one certain position. Unfortunately this machine takes four hours to harvest her stem cells from her blood and she has to stay in this exact position this whole time or the machine has a temper tantrum. She is getting bored now and just wants it to finish but on a positive note her stem cell counts are so good we may get all we need in one sitting rather than the planned two separate days. We will find out later today if we can avoid a repeat of this tomorrow and instead have a day at home.
The side effects of Jessica's upcoming treatment.
We have the results of the BEACON phase iib Neuroblastoma trial randomisation. Jessica will undertake six twenty-eight day cycles of chemotherapy using a combination of Bevacizumab and Temozolomide.
She will have scans and tests after every two cycles of chemotherapy to monitor the response to this treatment. The good news about this combination of drugs means that barring for high temperatures, infections, routine scans etc., Jessica only has to attend hospital two days out of the twenty eight day cycle. The Bevacizumab has to be administered in hospital as an outpatient but the Temozolomide can be administered by us at home.
This is fantastic after our recent news of most likely only prolonging life as it allows more time at home even whilst undergoing treatment.
Of course, like all chemotherapy there are still side effects:
Bevacizumab side effects:
High blood pressure
Severe diarrhoea - affects up to one in three people
Pain and weakness affecting the joints, muscles, chest and abdomen
Numbness or tingling in fingers and toes
Slow wound healing
Protein in the urine
Mucosal inflammation or inflammation of the mouth
Increased risk of bleeding and internal bleeding
Nausea and vomiting
Alteration in speech
Change in sense of taste
Dry skin, flaking and inflammation of the skin
A reduction in white blood cells (Neutropenia)
A reduction in red blood cells (Anaemia)
A reduction in platelets (thrombocytopenia)
Other important side effects of Bevacizumab:
As it has previously mainly been used to treat adults it is not known whether it will have any effect in the growth of bones.
Cases of osteonecrosis have been observed in patients under the age of eighteen. Osteonecrosis is a disease caused by reduced blood flow to bones in the joints. With too little blood, the bone starts to die and may break down.
Temozolomide side effects:
Nausea and/or vomiting
A reduction in red blood cells, white blood cells and platelets as mentioned above for Bevacizumab
Inflammation of the gums and other membranes and linings
Other important side effects of Temozolomide:
There have been some serious but rare cases of liver injuries including some with fatal outcomes experienced in patients receiving Temozolomide.
The majority of these side effects and dangers Jessica has already had to contend with or been in danger of contending with in her previous chemotherapy regimes but there are a few new ones in these two drugs. Hopefully Jessica can get through these six cycles with as few of these side effects as possible but as always it's good for us to be aware of the dangerous ones and what to look for to catch them early.
Treatment for Jessica starts next Tuesday!!! Here is to fighting back!!!
Jessica was also yesterday featured in yesterday's Lancashire Telegraph following her visit to Burnley Police station.
We have since found out we may also have the opportunity to visit the Lancashire Police Headquarters in Preston. I can imagine Jessica would be extremely happy to take them up on this offer as she had an amazing time last week.
A massive thank you to Burnley Police for inviting Jessica to spend time with them this morning and explore the station and courts. Jessica had a fantastic time locking people up in both handcuffs and cells and even mummy could not escape the handcuffs.
Jessica was given a tour right from the police reports room, through custody, prisoner cells, interview rooms and the court room. She met a number of officers who were all brilliant with her, showing her around and allowing her to get into the vans. She was even introduced to two police dogs although we all stood fairly still for one of them, a German Shepherd, amazingly trained but fearsome all the same.
Once more thank you to all involved, for making such an effort with her. Jessica absolutely loved it and wants to return and lock up some more baddies.
12th March, 2016
A couple more pictures from yesterday, having lunch out after our visit to Burnley Police station, Jessica wanting to make use of the play area.
We are having a nice chilled out day today to allow Jessica to recover from yesterdays antics. Sadly as energetic as she can be, a few hours activity such as yesterdays really takes it out of her. She is now suffering from pain in her joints and at the tops of her legs and she is very tired.
A few days of relative quiet now, barring a small trip tomorrow to meet Jessica's godfather who is helping to arrange the charity boxing match. These few days rest will hopefully put her in good stead to start her next lot of treatment starting on Tuesday.
March 13th, 2016Jessica went to visit her godfather, Tom, this morning to see him and others training at Fit2xl for the upcoming charity boxing event that has been set up for Jessica.
She had another fantastic and high energy morning, copying the exercises and getting in the ring to show off her skills. Tom was no match for Jessica and she had him on the mat a few times, overpowering him with a flurry of punches.
It was emotional meeting Baz and Bev, and others who are doing so much to help Jessica fulfil her dreams. A massive thank you to all these that are willing to put so much time and effort in to this fundraising.
March 14th, 2016
We have set up a new Just Giving page to raise funds for Jessica. The page is also running alongside the upcoming Combined Uniformed Services boxing event.
Since this diagnosis we have learnt the value of memories that we hold close. Now even more since these latest results we know the importance of creating future memories, making the most of every moment, grabbing every opportunity and making the most of it.
Click the photo for link
Through all of this treatment Jessica has constantly worn a smile, sometimes weary, sometimes pained but always a smile. We would love to fuel this smile further and all of your fundraising attempts have so far greatly helped to do this.
We would also like to take the opportunity to thank each and every one of you for all your support and fundraising efforts, past, present and future, we have not always been able to thank you personally but it is truly appreciated and very humbling.
Thank you from Jessica and all of us as a family xx
March 16th, 2016
Jessica has today been featured in the Accrington Observer.
This fundraiser was held some months ago now and the grand total from this amazing effort was £4000. The Kuon Ji Ju Jitsu Club has done numerous fundraisers for various charities in the past and it was amazing that they offered to also help Jessica. Jessica's Granddad is a Sensei at the club and Jessica loved going to the presentation of the cheque and taking part in some Ju Jitsu on the night.
A massive thank you to the club, everyone who took part and to the sponsors. We as a family were overwhelmed with the amount raised and left speechless and very emotional.
Click the photo for link
Yesterday Jessica started her new treatment at Royal Manchester Children's Hospital. It was a long day as we finalised all the details to enable her to be on the trial and we were all wiped out when we got home, all opting for early nights.
Jessica as usual was a star, despite boredom and tiredness from an early morning. We learnt how to make and administer her chemotherapy at home as every four weeks we now have to give a five day course at home. We also brought home the protective equipment to allow us to do this and now our kitchen well and truly looks like a pharmaceutical laboratory.
Today she has woke up in reasonably well health and high spirits, hopefully this will continue through treatment and allow her to enjoy going out rather than being stuck inside unwell.
Our daily regime this week now involves a bit of dress-up!!! Jessica thinks I look silly dressed like this, I agree ha ha.
Being able to do this at home does however mean we can spend even more time away from hospital and enjoy the days that Jessica wants to go and do something.
March 17th, 2016
Jessica seems to be coping really well with this new treatment and as yet has seemed to suffer no ill side effects. Today was just too nice to stay indoors so we decided to get out for a walk up to the park and pop in to visit Jessica's and James' great grandparents. We are back home again now in time to once again play dress-up and administer chemotherapy. This new treatment being very much based at home is still such a relief as we can now use days like this to get out rather than travelling to and from Manchester for treatment.
March 21st, 2016
We surprised Jessica today, setting off this morning, unbeknown to her, for a day trip to the Blackpool Zoo.
Jessica has always loved the zoo, the open space and the animals. She surprises us on each visit knowing the breeds of animals that we would not expect her to know. The last time we were here was in June last year, a few months before she was diagnosed. She has been asking recently to visit again and so was thrilled with the surprise.
We took her push-chair with her so as not to tire her too much but she still returned home shattered, sleeping in the car and then on the settee before tea. A couple of quiet days now to let her recover and hopefully we will get another day out at the back of the week.
March 25th, 2016
My superhero with her Build-A-Bear now dressed as Wonder Woman.
We are having a nice chilled out day, movies and snuggles for the majority of it. Jessica got herself dressed as Frozen's Queen Elsa this morning and so our first movie had to be Frozen!
Jessica is seemingly doing fantastic off this new treatment and as yet we have seen very few of the possible side effects. We have even managed to get out a few times this week, Blackpool zoo and Trafford Centre being the main days out. Previously during and after treatment we have been very limited to what we have been able to do but thankfully at the moment we have been able to make use of the days together.
Back to hospital on Tuesday for an audiology test and for chemotherapy, Bevacizumab. We are interested as to the results of the audiology test as a few of the drugs used can affect hearing and there are times we think that Jessica has suffered from this however it could just be selective hearing so often found in four year olds.
Pictures have become so important to us and often my camera is now glued to my side for any opportunity to capture a moment. I have fallen in love with this picture, despite her looking so old on it, this is Jessica to a tee, happy, cheeky and full of laughter.
Now my camera is always close to hand Jessica has taken a liking to taking her own pictures. I was trying out some new ideas today but had to give up and give in to her to let her take her own pictures. She has already decided she wants to go out with me up to the forest to take pictures of creatures and waterfalls. I have now had to dig out an old compact for her to use when we go out so that she can have her own camera to use. I think one day soon me and Jessica might need a little adventure where she can take her own pictures to put on here.
March 30th, 2016
Well Jessica returned to hospital yesterday for chemotherapy and a hearing test. Our routine now is to visit hospital once every fortnight on a Tuesday to be administered Bevacizumab and on every second visit to be given Temozolomide to take home and administer for five days.
The results of the hearing test show that Jessica has lost some hearing in the higher range, particularly in her right ear. A chat with her oncologist has shown that this was expected with some of the drugs used in her previous chemotherapy courses but her new course should not worsen this. She still has a large range of usable hearing but she will be monitored to measure if there is any further loss.
She was given the all clear to go ahead with chemotherapy yesterday and her oncologist was delighted with her well being and lack of apparent side effects to the latest course of chemotherapy.
We have also been given a date for Jessica's next scans, the first set since starting this new trial. Wednesday 4th May we will start the full set of scans and tests to see if the cancer is responding to treatment.