Jump for Jacob

Here is our story

It was January 2021 and Jacob our youngest was being sick but it was only once a day normally in the morning. We thought it was maybe something to do with weaning as he was 6 months old and we were trying him on different things but at the end of January he became very ill being sick and I rang the doctor and got a appointment with him. At the appointment we decided to take Jacob to the Cumberland Infirmary in Carlisle. While we were there a doctor asked if they could measure his head so I said yeah and he did. He came back a while later and asked if he could measure his head again so again I said yeah then he said I will come back with my colleague. They measured Jacobs head again and asked me if I thought his head was big for his age I said No not really to which he replied We think it is and we want to do a scan as we think he has fluid on the brain. Me and Jacob stayed in overnight and he had a ultrasound scan the next morning. The results showed a blockage and fluid was building up. We had to wait for a available bed in the RVI in Newcastle. Later on while we were waiting for a bed I put Jacob in his car seat while me and my husband had something to eat, Jacob started to have a fit I picked him up he was rigid and shaking I held him while the doctor's worked on him to get a cannula in after that we were told he needed a tap put into his skull to release the pressure on his brain. After they had stabilised him we were bluelighted to Newcastle in the early hours of Friday the 5th of February as soon as we got there he was rushed into theatre for a emergency operation. We waited for what seemed like ages when the nurses came and got us he was in PICU we went into see him his little body covered in wires and machines beeping. The blockage was cancer and later that day he had another operation to determine what sort of cancer it was. We were told the doctor's thought it was a type of cancer that was treatable but on the 9th of February we found out it wasn't the one we had hoped it would be and instead in was a Atypical Teretoid Rhabdoid Tumor or ATRT for short a very rare and aggressive type. We had 3 choices 

1, A operation to remove as much of the tumor as possible and treat with intense chemo and a 10% chance of curing him. But we could lose during the operation. 

2, Palliative chemo.

3, Take Jacob home and let nature take its course. I asked how long if we chose the last one and they said afew days to a week. Me and my husband decided it was a small chance but it was still a chance so we went with the operation. Jacob went for his operation on the 11th of February the theatre was booked out all day for him. He went down at 10am and we went for a walk round the park twice, sat on a bench anything to pass the time, then we got a phone at 2.40 we looked at each other thinking something was wrong I answerd it. It was the nurses on the ward letting us know the operation was finished the anesthetics were finishing up with him and he would be back on the ward in about 40 mins. We went up to see him he was hooked up to machines and more wires but he was still here with us. We had to wait for him to get stronger before we could start his chemo. His started his chemo on the 26th of February he was having 2 rounds of 3 sets. His 1st set lasted 3 days we were allowed to go home when it finished. We went home on March the 2nd but had to go back for his 2nd set on March the 11th during our time at home Jacob started to get sick again same symptoms as before being sick, sunsetting eyes we thought it was maybe side effects of chemo so we waited till the 11th and went back to the RVI. We had only been there half an hour and he was unresponsive he needed another operation to insert a shunt into his brain( a little tube that runs from the brain to his stomach to drain the fluid away. After that he was awake for nearly 24 hours just taking everything in and looking around and taking his bottles. Afew days later he was having his 2nd set of chemo. He was doing well having his chemo and battling on. Then on May the 28th after he finished all his chemo and spending weeks in and out of hospital we got the devastating news that the cancer was growing back and there was nothing more the RVI could do for our beautiful little boy. We asked how long do we have and the consultant said afew months I asked would we get Christmas and he just looked at me so I said his birthday he asked when that was I said July 29th and he looked again and said afew months. We had to make memories while we could. So we went home and decided to make the most of the time we had left. Then on the 2nd of June Jacob became really unwell quickly we rang for a ambulance and we were rushed to the James Cook Hospital in Middleborough they examined he and we were told they didn't think he had long his shunt was blocked again. The Poon's nurses came from the RVI and gave him some medication to calm him and they said we could go back to the RVI or a hospice over in the North East it was then that I asked could we not go to the Jigsaw Children's Hospice in Carlisle it's the only Childrens Hospice in Cumbria. The nurses at James Cook Hospital sorted it all out and me and Jacob travelled back in the NECTOR ambulance and David my husband and Jacobs dad followed behind in the car unsure if Jacob would make it to the hospice but he did we got there on the 7th of June and they were amazing we had our own room with a cot beside the bed and en suite bathroom everybody was lovely and they did everything for us making our meals, washing our clothes all we had to do was spend time with Jacob. All they family were allowed in to see us and spend sometime with us they even helped with finding a hotel for my daughter to stop in as she came up from Devon to spend sometime with us and Jacob. We have no idea what happened but Jacob went from strength to strength and he started to interact with us again and play and laugh it was amazing our beautiful little boy was back. After about a month and alot of discussions we decided to go back home but the hospice said we could go back anytime we wanted to. We were at home from June 30th until the 15th of August. 

We went on holiday with family, had a day at Blackpool Zoo , had Jacobs 1st birthday party and a sponsored Bike Ride. Then on Friday the 13th of August Jacob wouldn't settle and after a visit from the Poon's nurses we decided it was time to go back to the Hospice and on the 15th we went back in. We had the same room the nurses and staff were all amazing but on the 28th of August Jacob passed away with me and his daddy beside him. 

After we had spent sometime with Jacob washing him and changing his clothes we moved him to The Butterfly Room in the hospice it's a air conditioned room where we could spend time with Jacob singing to him ,reading him stories and holding him. We could stay as long as we wanted. 

We went home after afew days but we went back every other day to see Jacob until he left from there on his funeral day and the nurses were amazing they carried his coffin out and placed it in the hearse. 

The hospice will always have a very special place in mine and my family's heart as they are all amazing. I am having counciling at the moment and that was sorted by the hospice aswell so that is why we want to raise funds for the very special place. 

Some of the money raised will go to pay for the skydive but the rest of the money will go to Jigsaw Children's Hospice.