September 16th, 2016
Jessica is currently an inpatient at Royal Manchester Children's Hospital due to developing a high temperature yesterday afternoon. She was in fact already at hospital when she developed the temperature as she was visiting clinic for her routine appointment.
We knew before taking her that she would be needing a platelet transfusion due to numerous bruises and the development of a platelet rash. Upon getting her blood results back we found that she was in desperate need of platelets and also in need of blood as her haemoglobin was low. Just before receiving the six hours of transfusions Jessica spiked a high temperature and an hour later it hadn't gone down and so was transferred on to the ward. Jessica will now have to stay in hospital for a minimum of forty-eight hours from her last recorded high temperature which so far was last night.
Her neutrophil levels are extremely low now and she is now classed as neutropenic. We will now have to consider very carefully when Jessica can return to school as at the moment she is extremely susceptible to infections which will put her back in hospital and can also be very dangerous to her. It is a massive shame as she has loved the three afternoons that she has managed to attend school and she will be devastated to learn that she will have to miss out for a period of time but her health is our foremost concern.
Hopefully if her temperature stays down and her blood cultures come back clear we can get her back home late Saturday/Sunday. She is fine in herself, in fact hyper this morning, she has a private room and is bouncing off every wall which is a good sign.
She has been such a brave girl having to have two cannula's due to her Hickman line not bleeding back. Her oncologist is so happy with her progress that her routine appointments that used to be every fortnight have been changed to monthly!!
September 23rd, 2016
Today has marked a year to the day of Jessica's diagnosis. This is the status I put today on my personal profile marking this milestone...
Today is a date etched deep into my brain, a scar from a conversation with a doctor, a moment in time that will never leave me. This time last year we were oblivious to the darkness we were about to be thrust into, heading down for an MRI scan on Jessica to discover what was lurking inside of her. By dinner time today we had our answer, the conversation that to this day still seems so vivid yet so surreal, the face of the doctor as he entered Jessica’s room an image that stays with me like a haunting photograph.
Today marks the one year anniversary of Jessica’s diagnosis of stage four, high risk Neuroblastoma. It has been a hellish twelve months with seemingly more lows than highs, a constant battle of survival for Jessica and a battle of depression for myself. For the most part it has seemed that for each glimmer of hope we have been presented with, a dark vicious blow awaits not much further along the way.
There have been days, many of them, when I could not even be certain that I would wake up with my princess such was her suffering and ill health. There have been times where I have had to contemplate not just the what-ifs but also the when. There have been goodbye kisses where I have had to hold back tears not wanting Jessica to see me break down.
Childhood cancer is a vicious and unforgiving disease, parents forced to watch in anguish as their own flesh and blood suffers more than words can describe, those same parents, like myself, who have had to physically restrain their child as medical practitioners perform procedures that a child does not understand. I cannot count the amount of times I myself have had to restrain Jessica as she screams in fear and cries in pain as a doctor or nurse presents another needle, a nasogastric tube or a catheter.
Through all of this Jessica has been a fighter, her strength and her smile keeping me going. She is still oblivious to her diagnosis, too young to understand. She is however still insistent that she will get better, constantly making plans for the day that she is better. It is amazing to see her joyful spirit, her playful nature with her little brother and to witness her enjoying life. Even as little as two months ago I would have not been able to foresee this spirit that she shows today such was the level of her tumour growth and unrelenting pain.
Each day I pray to wake up to news of a new miracle cure, a chance that this disease will not win its fight. I keep a sense of hope with an air of reality, a reality that one day I may wake and Jessica may not. It is this sense of reality that keeps me treating each day with the respect it deserves, a muted hope that something will change for the better but without building myself a sugar pedestal to be washed away should the unimaginable happen.
Jessica is at the moment doing well, her strength and weight increasing, her laughter louder and more prolonged each day. I know though how quickly this can change, how rapidly this disease can change the odds. I have witnessed first hand this onset and seen others lose this fight quicker than I care to detail.
The one thing that will get me through today is that through all of this, Jessica is still here, still fighting, still sneaking into bed beside me for a morning cuddle, still making me smile with her witty comments. Today I can still hold her hand, tell her how much I love her and listen to her affectionate reply. The kisses and the cuddles I cherish for I know that I am lucky to still have these much loved moments and hang onto them at every opportunity.
My prayer for today is that on this date next year I can still have and savour these moments but for now I live day to day and week by week not taking this fragile life for granted.
