May 1st, 2016
Amazing Sunday morning! Jessica has been maintaining her weight from food alone without additional supplementation, gaining weight in fact as she eats us out of house and home.
This last couple of days she has also been taking her medication orally, not relying on her NG tube at all. This morning Jessica was extremely excited as we told her that if she wanted, I could remove her tube. She was extremely brave as I removed it and is delighted to no longer have it!
Finally getting my princess back!!!xx
May 4th, 2016
Back to hospital this week for a full set of scans, the first set since starting this new treatment two months ago. We met with Jessica's Oncologist last week who was delighted with her apparent and obvious well-being.
Jessica appears to be doing really well on this new treatment with no visible or obvious side effects barring from the tiredness. I only pray that we are not being lulled into a false sense of security and that Jessica can actually defy the doctors and the given prognosis.
It will take a couple of weeks but I am praying that the scans show what the external signs are hopefully indicating and that Jessica is somehow fighting back.
She does seem to be doing so well at the moment, her NG tube now removed, her hair coming back thick and fast, still no sign of pain and no need for pain relief.
Jessica will have a radioactive tracer injected into her today and that will travel throughout her body and stick to the cancer cells. Tomorrow and Friday, alongside other scans, Jessica will have an MIBG scan which will highlight those areas that the tracer has stuck to and show us exactly what impact this new treatment has made.
May 5th, 2016
Popped in for a treat on the way home from hospital. Jessica has been a superstar today, two scans, one MRI and one MIBG, both consisting of her laying absolutely motionless for 40 minutes each. The MIBG we know she can do for long periods without sedation but such a long MRI was a huge challenge as previously she would have been sedated for such a long duration. Back tomorrow for one final MIBG scan and then the weekend is ours!
I was in good spirits today, me and Jessica singing away in the car on the way to hospital, being silly and pulling faces. A few hours ago I met with Jessica's oncologist to have her checked to start today's chemotherapy. Rather unexpectedly for me he had Jessica's results from last week's scans, I was not expecting the results for another few days.
Those high spirits soon began to fade as he informed me that the new treatment has not worked how I wanted it to. The tumours in Jessica have shown no visible change, no reduction in size that I had prayed for.
I had half expected this due to her prognosis and the knowledge we have about this disease but I had been praying so much that Jessica was defying medical knowledge. She has been doing so well with this new treatment and in a way it has further fuelled our hope that she will beat this but hearing that today was a blow.
Indeed the positive side to look at is that the tumour has not grown any more and the treatment is currently keeping it at its current size. At least she is having a quality of life that we could have only prayed for at the end of last year, at least she still suffers no pain barring for wobbly legs.
Tomorrow I may be more positive still but today, after the discussions I have had, I really am struggling to find much more positivity to offer.
All I know for now is that Jessica has a lot more fight to give, the strength that she is building daily will be used to fight this cancer.
May 22nd, 2016
Good morning everyone, we have been a little quiet this last week or so. Jessica is still doing well but this last few days we think the last few weeks have caught up with her and she has been very tired and has been having tired and wobbly legs.
Jessica has been taking herself up to bed mid-afternoon for a nap or a lie down with no prompting from ourselves, such is her tiredness at the moment. We were at one point on temperature watch as it was slowly creeping up but thankfully it did not reach critical point.
We will mention all of this to her oncologist on Tuesday when we return for chemotherapy but we do not think there is anything in it. As said she has had a busy few weeks and I think that all of the that has built up and she just needs this rest to recuperate.
We will most likely update progress on Tuesday now as we are having a very chilled few days, watching films, eating rubbish and enjoying snuggles.
When we initially arrived at ward 84 (oncology & haematology), at Royal Manchester Children's hospital, we arrived late on, with the ward lights dimmed and curtains drawn. We sat in trepidation, feeling alone and scared of the place we found ourselves.
Waking the following morning after a night of very little sleep, the light now pouring in, curtains opened, we then began to see children fighting horrendous battles against these awful cancers with nothing but a smile on their faces whilst filling the corridors with the sound of laughter. A place we were initially scared of now offering hope, a sense of unity, a feeling of family.
Watching children running up and down the corridors, infusion pumps being dragged along behind them, racing as other children fly around on ride on toys. Making friends with those that are going through the same challenges and understanding when those friends needed rest, not questioning their sickness or fatigue as they felt it too.
Jessica used to amaze us knowing what medicines she was due to have, coming out with names such as Ondansetron, Domperidone and Acyclovir, names a three/four year old should not know.
A children's oncology ward is a place no child or parent should have to see but for those that do it is a place of hope, of fight and of family.
Those people we have met and become friends with through ward 84 forever held close in our heart. They have been our strength and our councillors through this journey and they will never be forgotten.
