Parents raise awareness of a rare

by Natalie McCulloch

Having a relative who is unwell is never easy, even more so possibly when that loved one is a child. Two amazing parents have been kind enough to share their journey with their beautiful daughter’s illness, in the hope that they can raise awareness of their daughter’s condition, encourage other parents affected to seek support early, and raise vital funds for the incredible hospital which provided their care.

Emmeline’s parents, Clare and Mike, first realised something wasn’t right with their daughter in July last year. They noticed a small dip in her lower back and though they didn’t think anything of it at first, the area began to swell, and they decided to get it checked. At the local hospital, Clare and Mike were told that their daughter probably had a cyst but were given a referral to the surgical department at the Noah’s Ark Children’s Hospital just in case. While they waited for the appointment, both the lump and the swelling increased and by the August Bank Holiday, Emmeline was in so much pain that she couldn’t sit down and had taken to eating whilst lying on her stomach.

Clare says: “We called Noah’s Ark and explained the situation and were told to come straight down. It was a struggle to get Emmeline into her car seat because she was in so much pain. Over the next few days, the doctors did scans and took bloods, and we took it in turns to be with Emmeline as the one parent only policy meant that we couldn’t both be with her at the same time. But when they called us in for the diagnosis, they asked for us both. I thought at the time it was because I was pregnant and they didn’t want me to wait in the car but looking back now, I know why. I honestly don’t think cancer had crossed my mind but somehow when they told us, it didn’t come as a surprise. Emmeline had something called a germ cell tumour on the base of her spine which had already started to move into her coccyx and lungs. The first thing we both wanted to know was “what next” and it was a relief to know they already had it all planned out. Emmeline would have a portacath (a small chamber or reservoir that sits under your skin to administer fluids and treatments for as long as needed via a needle) fitted the next day ready to start six cycles of chemotherapy that would last four months, followed by surgery to remove the tumour.”

Germ cell tumour (GCT) is a type of tumour that usually develops within the ovaries or testes. There are many types of germ cell tumours and only some of them are cancer. Germ cell tumours are rare and account for 5% of all childhood cancers. Germ cells are the cells that develop into sperm and eggs.

Thankfully Emmeline responded well to the treatment, but it took a while for her to adapt to her new situation and surroundings. Usually, a very active and independent toddler, Emmeline was now attached to tubes and drips, and the familiarity of her home and family were suddenly replaced by an unfamiliar hospital and strangers doing things to her that she didn’t understand. For Clare, seeing her usually happy and easy-going toddler both in pain and distress was by far the hardest part.

Clare says: “For Mike and I, juggling Emmeline’s treatment routine became our new normal. It was incredibly hard not to be together while Emmeline was in hospital, but we just got through it because we had to. Mike was fitting hospital visits around work, and I could only care for Emmeline during her time at home because I was heavily pregnant. There was a risk to the baby being in hospital for her radioactive scans and it was uncomfortable to sit for hours while she had treatment. This was heart breaking because it meant I wasn’t able to be with her and we couldn’t be there together during her chemo. And of course, there was the added difficulty of having to keep our distance from friends and family who would usually have been there to help.”

Emmeline had her last course of chemotherapy on New Year’s Day and a successful operation to remove the remainder of the tumour at the end of January. She recovered well and only had to return to the hospital for check-ups. By April, with a date to have Emmeline’s portacath removed in the diary, Clare and Mike were allowing themselves to plan for a family life after cancer treatment. Unfortunately, this was short lived. A routine blood test showed a slight increase in infection markers and a follow up check revealed further elevation. Though smaller and flatter this time, Emmeline’s tumour had returned and the family, now with the new addition of baby Edward, were back on the rollercoaster.

Clare says: “That news was like a kick in the stomach, but we comforted ourselves with the knowledge that the treatment worked last time and that this time the tumour was smaller and more contained. Because Emmeline’s body may have built up an immunity to the previous type of chemotherapy, she was now on a different type of protocol which meant she had to stay in hospital for five nights and six days every three weeks. The good thing being that even

though the sessions were now longer and harder, we could share the time, swapping out every 48 hours to be with her. We were aware she would need an operation again at the end of it and perhaps a temporary colostomy bag but like last time, we took one day at a time.”

Emmeline had her surgery on the 12th of October, as planned and thankfully all went well, and she was home on Saturday the 16th. Mike reports: “She’s got sore areas where the incisions were done, but otherwise she’s bouncing around as usual. Her hair is even starting to come back. Shadowy at the moment but looking good. The pathology on what was removed is encouraging. Looks like there was more of a margin of healthy cells around the tumour than last time which is better and gives hope that it won’t come back. She’s still isolating until her implants come out as there’s still and infection risk but she’s doing really well in the meantime and has helped Edward to take his first steps!”

For their family now, life will proceed cautiously as one of the side effects of Emmeline’s chemotherapy is that she is neutropenic (she has a reduced immune system), leaving her massively at risk to all infections including Covid. Mike shares: “As a result, she’s not been inside a shop, supermarket, nursery, or relatives’ home (etc.) in a year in case she picks something up. Any family members who come to visit do tests before they come, and we’ve asked everyone to stay away if they have any symptoms of any illness. We only go out when absolutely necessary and have shopping delivered where possible. We’ve taken an extreme reaction to it but if her temperature raises to over 38 degrees its immediate hospitalisation and quarantine for 48 hrs while the blood cultures come back. If there’s a positive result for infection, then it’s a hospital stay for anywhere between 1 and 3 weeks depending on how long it takes to get over it. So far we’ve been lucky, and this has only happened once for 4 days.”

For Mike and Clare identifying this form of cancer early and getting help, was essential to Emmeline. Alongside taking care of Emmeline and adapting to their new way of living (including the joyous addition of baby Edward), they are keen to raise awareness of germ cell cancer. Mike tells us: “It would be great if someone else picks up a similar complaint early having read her experience.”

They have already done incredible things to raise awareness and essential funds to keep the hospital which treated their daughter going. Mike finished a cyclothon which raised an amazing £2300 which is incredible especially considering he is, by his own admission, not the most physical type, but thanks to their eldest daughter Julia who helped train him and a lot of self motivation, he successfully completed this from his home exercise bike. Clare is currently having her beautiful hair cut and donating it to the wig charity whilst aiming to raise vital funds through doing this. You can follow her story, and support her with a donation if possible via her Facebook page and JustGiving page: https://bit.ly/30UJquR

Clare says: “We knew that the Noah’s Ark Children’s Hospital existed before Emmeline became ill but, like most people, we never really thought about how much goes into it and assumed it was funded entirely by the NHS rather than part funded by the donations made by ordinary people. The staff here are amazing and we’re in absolute awe of them all. Everything is geared around the needs of a child, both physically and emotionally to make sure that they don’t fear coming here and having treatment. It isn’t always easy to entertain an active toddler who’s wired to a drip, but the play team work so hard to engage Emmeline with different things. Emmeline has quickly won over the hearts of the nursing staff who even let her sit at the nursing station with them!”

Mike and Clare urge anyone who is able to, to consider donating to help keep the Noah’s Ark Children’s Hospital being able to do its incredible work with the 73,000 children they treat annually. Please check out their website or follow them on social media to see how you can make a difference today.

https://noahsarkcharity.org