Home is where the heart is: Jacob’s Christmas at GOSH

19 Dec 2022, 2:39 p.m.

Light blue background, illustrated tree and snow next to two photos, one showing a letter for Jacob from Santa and the other of Jacob smiling to camera

In 2018, when he was 18 months old, Jacob arrived at GOSH with a rare immune disorder called hemophagocytic lymphohistiocytosis (HLH). He had chemotherapy and a bone marrow transplant.

Despite the transplant going well, due to complications, he needed to have a second one in December 2021.

Here, Jacob’s mum, Emily, tells us more about Jacob’s journey so far, including how it felt spending Christmas at GOSH.

“For the first 16 months of his life, Jacob seemed to be absolutely fine. Then, one day, he got poorly. He had a high temperature that, no matter what we tried, we couldn’t get back down. After four days and no improvement, I decided to take him to our local GP.

“Although the GP wasn’t particularly worried, they suggested we take Jacob to our local A&E as his temperature kept spiking. He had the beginnings of a rash as well.

“At our local hospital, doctors examined Jacob and did lots of tests but couldn’t work out what was wrong.”

Arriving at GOSH

“After a few days, we were told that we were being transferred to GOSH as Jacob was seriously unwell and wasn’t getting any better.

“He needed more tests, CT scans and lumbar punctures to get a diagnosis. His blood results were very deranged. He required haemoglobin and platelets urgently.

“Doctors told us that they thought it might be something serious and they needed GOSH to take over Jacob’s care. I was worried when I heard GOSH mentioned and it was very surreal to suddenly be blue-lighted there.

“On the way, in the ambulance, Jacob wasn’t in a good state – he was struggling to breathe and needed oxygen. I remember when we arrived, we went straight onto GOSH’s Lion Ward.

“Our world turned upside down”

“Soon after arriving at GOSH, we were told that Jacob had hemophagocytic lymphohistiocytosis (HLH), which is an aggressive disease where white blood cells build up and attack organs including the bone marrow, liver and spleen, and destroy other blood cells. It is very rare and life-threatening. We were told the only way forward was for Jacob to immediately start chemotherapy treatment and have a bone marrow transplant.

“In a matter of days, our world turned upside down.”

Starting treatment

“Jacob started treatment straight away, which was tough. He received a drug that was going through a clinical trial, which meant he was constantly monitored by doctors.

“Although we were able to go home a few weeks after arriving, we had to come back to GOSH twice a week for eight-hour transfusions of this drug. This was so intense for a child who wasn’t even two yet.

“Jacob received regular lumbar punctures and bone marrow aspirate therapy. Damaged cells were then found in his spine, so he had more targeted chemotherapy as well.

“During this time, doctors were trying to find a bone marrow donor. This took a little while as they wanted the donor to be a 10/10 match, as the transplant was Jacob’s only real lifeline.

“In December (2018) a donor was found, and Jacob had the transplant in March 2019, which all went smoothly.

“The recovery was tough though; Jacob was only two years old at this point and had to recover in isolation on Fox Ward until the end of June.

“Having to keep a child that young in isolation was so hard but it was so important he didn’t catch any infections as he was immuno-compromised. However, Jacob recovered well, and we were then able to go home at the end of June.”

Spending his third birthday at GOSH

“After spending most of July at home, Jacob unfortunately got poorly again in August.

“He had hemolytic anaemia after being on so much medication and strong steroids. He then had to go onto TPN (total parenteral nutrition), and we went back to GOSH in September.

“Jacob spent his third birthday in hospital while he recovered from these complications. All the staff still went to so much effort to make it a special day. They got him presents, a cake and sang Happy Birthday to him, which he just loved.”

Charity funded accommodation a “life-line”

“We were in and out of GOSH until around March 2020, which was when the Covid-19 pandemic hit.

“We stayed on a few different wards during this time, including Butterfly, Giraffe and Elephant. I stayed with Jacob every single night he was at GOSH... there was no way I was leaving his side.

“It’s around two hours each way for us to get to GOSH and we weren’t ever able to use public transport due to Jacob being immunosuppressed. It was quite an undertaking constantly going back and forth. Having the charity-funded accommodation close by the hospital was a lifeline and helped us stay together as a family a bit more, at a time when we were separated more than ever.

“Once the pandemic hit, it became more imperative to keep Jacob safe and make sure he didn’t catch anything.”

Second bone marrow transplant

“Jacob was in and out of GOSH for the bulk of 2020 and 2021 with constant infections and complications.

“It got to the point where he just had no quality of life. He couldn’t do anything – he wasn’t able to mix with any other people or go out anywhere. He got to four years old and had never been in a shop or into a restaurant to have a meal.

“As he just wasn’t getting any better, doctors decided that Jacob needed to have a second bone marrow transplant. It was hoped it would help to start building his immune system and he would be able to go on to have a more normal life.

“There was a bit more waiting around while the right donor was found, but eventually we got the call in December 2021 that the second transplant could go ahead.”

Picture showing snowy display with reindeer outside GOSH entrance - picture taken in December 2022

The most special gift of all

“Jacob had this transplant on 21 December 2021. It was the most special Christmas gift of all.

“We then spent Christmas Day at GOSH. Everyone at the hospital goes to so much effort to make sure you can still have a nice day. Obviously, no one wants to be there over Christmas, but it’s such a positive place. Staff decorate the wards and make it look really special. They made sure that Jacob had presents to open on Christmas morning – thanks to gifts donated to the hospital.

“Jacob left a plate out on Christmas Eve with a mince pie and a carrot for Santa and his reindeer. I remember the Play team also left some "snow” in the rooms and on the wards, so we could see where Santa had been!

“Jacob spent most of Christmas Day in bed, but when Santa walked past the room, I made sure to get him up so they could have a photo together through the window in his room, which was really special.”

Home for Christmas

“After his second transplant, Jacob recovered in hospital. We got to go home at the end of January 2022.

“We are really hoping that we get to spend Christmas as a family at home this year, which will be the first time in three years.

“The 21 December 2022 will be an important milestone for us as well as that will mark one year post transplant. [The transplant] gave Jacob a second chance at life, and we couldn’t be more grateful.”

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