Charity
- jessica's helping hand
- charity number: sc051838
Fast forward to the 12th July I noticed Jessica’s right eye started moving rapidly from side to side and due to my previous eye history I knew we had to get it checked. We took her to the GP they referred her but it could take 3-4 months to see a specialist, so we took her to a private doctor who carried out checks they confirmed Jessica needed glasses but she needed an MRI to determine the cause for the movement. Due to her age they couldn’t provide this service and this would need to be done by the Children’s hospital. They were going to try and fast track Jessica through the NHS process.
Towards the end of July I had an appointment which was prearranged with Jessica’s health visitor, I was concerned about her weight. At the appointment she confirmed my concerns Jessica had dropped from the 50-75th percentile to below 0.4th percentile. We were to visit the doctors again. When I called the doctors they referred Jessica to paediatrics and told me that if i didn’t hear
anything in two weeks to call them back. The next day Jessica wasn’t taking her feed so I called the doctors and requested an appointment that day. The doctor confirmed her stats were all fine but due to weight loss and her unusual eye movement we were sent to Wishaw hospital. On 29th July Jessica was admitted to Wishaw for the next 12 days they carried out numerous tests (bloods, genetics etc), inserted a feeding tube, closely monitored her weight, treated her for reflux and referred Jessica to the Glasgow Children’s hospital for an MRI.
Wishaw were not able to provide this.
10th October was Jessica’s first follow up scan to check how the tumours were reacting to the chemo we were hopeful that it was going to be good news as Jessica was improving week on week especially with her weight which was one of our concerns and we tried everything to reduce her sickness and help her gain weight. We even managed a record weight gain in a week for a baby. The morning after her scan (a Friday) we received a call from the hospital asking us to go up ASAP. Being asked to go up ASAP was worrying enough but knowing that her nurse and oncologist didn’t work on a Friday meant that it wasn’t good news. All of Jessica’s tumours had grown the larger tumour was double the size, tumours in her brain were close to her brain stem and tumour’s is her spine were close to her spinal cord which could cause paralysis.
The following Monday we received a call to let us know that the plan was changing. They were concerned that surgery would only tackle the larger tumour and the recovery time would be a few weeks at least due to how evasive it was going to be. During this time the other tumours could grow which could be deadly. They decided to try another chemotherapy called Vincristin and Carbo Platin. She would receive vincristin weekly similar to before but she would also be given carbo platin every few weeks. We attended the hospital the following day to receive her first dose of the new chemotherapies and similar to before she was kept in for 24 hours before being sent home.
On Wednesday 10th November we had a meeting with her oncologist it was a horrible conversation – they didn’t believe Jessica was strong enough for any more treatment or surgery (as mentioned earlier her shunt was externalised with the tubing come out of her chest)to internalise her shunt. There was nothing else they could do and Jessica was being put on palliative care and we had to decide where that care would be provided – at home, hospital or a hospice. We didn’t think twice we wanted our girl home. We had to sign a do not resuscitate I can’t begin to explain how hard that was but we understood Jessica’s current condition and the possible consequences of resuscitation bring. We were told Jessica had weeks instead of months. On the 12th November we brought Jessica home in an ambulance.
That weekend I kept replaying the horrible conversation: she has weeks rather than months and that time was creeping away. Not long after that we were told she had days rather than weeks. Friday night I couldn’t sleep so i carried out more research this time I focused on the inhibitor and who would provide this in the UK. I came across Novartis and I wasn’t 100% sure if this was the correct company but I was helpless and this was the only thing that I could do. I found the CEO on LinkedIn and found his email address amazing! I won’t go in to details about the email but the title was “help me save my 8 month old daughter” I explained the research that I had found and also what I knew about their business (yeah I researched that too) and I explained my feelings being Jessica’s mum. I hit send and tried to put it to the back of my mind and focus on Jessica.