About Us

Jessica's Story

Jessica Linda Mary Gibson was born 09.03.21 a healthy, content and gorgeous baby girl. She was loved and had the best smile and infectious giggle, she was just amazing. You could see from early on that she had a special bond with her big brother, one that I and Andrew would never be able to come between. Jessica continued to develop and grow. She gained 3lbs and was hitting all development stages. She loved to lie on the floor playing with all her toys and she loved to play with balloons. On so many occasions Ethan would laugh and she would giggle along and we felt like we weren’t included in the joke. She loved her play mat and from an early age, she showed us all her strength by grabbing the toys and trying to pull them off. Her health visitor even commented on her strength. 

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.

On the 10th August we travelled to the Children’s Hospital for Jessica’s scan after her scan we were told to wait in a room as a doctor was coming to speak to us. I knew this wasn’t good but it never once crossed my mind that we were about to be told that our daughter who was just 5 months old had cancer. At this point everything moved so quickly we were transferred immediately to the children’s hospital further tests were carried out and a plan put in place which involved major brain surgery…. my baby girl was only 5 months old. On 26th August Jessica received her first round of chemotherapy. We were surprised how quickly she recovered from 3 operations as we had been told she would need at least two weeks to recover but she received her first round two days after the central line was inserted and 9 days after her initial surgery.

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.

Jessica’s team all discussed what to do and we went home on the Friday to prepare for further surgery the following week. This surgery was going to extremely evasive and we weren’t going to get our baby girl back the way she was. I remember being scared to touch her thinking i could cause harm especially when we were using words like paralysis. We were devastated and when i say we i don’t just mean family and friends her whole team that were involved in her care couldn’t believe it. She was doing so well and did not give us any sign that her disease was getting worse.

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.

That weekend Jessica spiked a temperature which meant a hospital admission bloods were taken on arrival and Jessica was put on a course of antibiotics. This is the process when a child in Jessica’s position has temperature spike because of the risk of infection. Jessica was tensing her body and she was turning her hands outwards we later found out this was posturing and a sign that the disease was progressing further. Jessica’s stomach was really blotted something we hadn’t seen before. Her feed was stopped and she was taken for surgery to externalise her shunt. They were concerned that if she had an infection in her stomach this could travel to her brain via the shunt. She was put on TPN through her central line to give her stomach a rest but make sure she still received vital calories. We were kept in for further monitoring.

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.

Morning of the 19th November we called an ambulance after speaking to Jessica’s nurse her temperature was over 40 degrees and she wasn’t sleeping for any length of time. They told us the temperature was due to the disease progression and it’s her body reacting to this. We were advised that Jessica now had days rather than weeks and we were sent home the next day. On Thursday 25th November her bloods were taken and it was an anxious wait for the results…. Did we do enough bearing in mind we were told we would struggle to replace what she was losing never mind increase her levels. The results came back and Jessica’s sodium levels were slightly higher than normal I couldn’t stop crying I was so happy but again it was an anxious wait until Monday 29th which is when he oncologist was due back out. We continued what we were doing trying to build on Jessica’s strength, weight and mobility.

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.

The afternoon on Tuesday 7th December Jessica took her last breath in my arms she passed away peacefully with me and her dad at her side. I remember I kept apologising to her that I didn’t do more and I promised her that I would help other families fighting this horrible disease using the knowledge I had gained and our own experience, I told her that I would make her proud and make sure her legacy lives on.