Raising awareness of Acute Lymphoblastic Leukemia and the charity LATCH who give much needed support

from Cardiff Times - March 2022

Protect Your Wealth

Raising awareness of Acute Lymphoblastic Leukaemia and the charity LATCH who give much needed support by Natalie McCulloch

2020 was a year of uncertainty, medical mayhems and crisis for the nation with Covid 19 taking the world by storm and our population being pushed to extremes, and 2021 followed suit. One area which was undoubtedly pushed to extremes was the NHS with workers facing treacherous circumstances like never before and doing incredible things to help keep our nation safe.

Similarly, families were facing challenges, being separated for long periods and facing crisis’, redundancy and isolation from loved ones. It’s safe to say it’s been an epoch like no other! One family who knows this all too well are the Barkers from Barry. Grandparents Jo and Jason worked tirelessly throughout the pandemic for the NHS, supporting Llandough hospital on a full-time basis whilst also supporting their first grandson, Issac and his parents, through a life-threatening battle of their own.

Issac was diagnosed with Acute Lymphoblastic Leukaemia (ALL), a cancer of the blood/bone marrow, at age 14 months. Since then he has undergone chemotherapy, blood transfusions, steroid injections and theatre procedures. A challenging time made more extreme by the restrictions and hurdles put in place by the pandemic.

Jo told me, “Issac, my grandson, is our first and words can’t express how much this boy means to us. We adore and love him so much and we’re so proud of him, he is a very strong sunshine, and has coped so well, nothing bothers him and is always smiling.”

Now, 18 months later, the families’ journey continues as they prepare to support Issac, who is currently at home with a 24-hour pump, as he undergoes his bone marrow transplant in March 2022. Alongside this they are climbing Pen Y Fan to raise money for, and awareness of, the charity, LATCH, who helped support them throughout this journey.

Jo explained: “Having a grandchild so poorly, as you can imagine, has been very difficult especially through lockdown as well. I haven’t been able to do duties that grandparents do…we can’t take him to nursery, we can’t have him sleep over. His immune system drops so low and we have to be very careful. It can be very upsetting as a grandparent as through lockdown I felt my son, Issacs’s dad, was alone as we couldn’t be there for them, they had to stay in hospital day in and day out and we as grandparents couldn’t go into hospital and take over to give them a break. All these things are just so upsetting for us as grandparents and for Issac, also it’s been very tiring and a long road for his parents.”

Childhood acute lymphoblastic leukaemia (ALL) is a rare type of cancer in which the bone marrow makes too many immature lymphocytes (a type of white blood cell). It affects approximately 790 people a year, adults and children, and is the most common type of leukaemia that affects children, with 85% of cases affecting children happening in those younger than 15. This type of cancer usually gets worse quickly if it is not treated. In a child with ALL, too many stem cells become leukaemia cells which are not able to fight infection very well. Also, as the number of leukaemia cells increases in the blood and bone marrow, there is less room for healthy white blood cells, red blood cells, and platelets. This may lead to infection, anaemia, and easy bleeding. Signs of childhood ALL include fever and easy bruising, Petechiae (flat, pinpoint, dark-red spots under the skin caused by bleeding), painless lumps in the neck, underarm, stomach, or groin, and loss of appetite. A doctor should be consulted if you are concerned that a child is experiencing any of these symptoms.

In times of such stress and turmoil we all need someone to turn to, that’s where LATCH steps into action!

LATCH (Llandough Aims to Treat Children with Cancer and Leukaemia with Hope) supports the children and their families who are being treated by the Oncology Unit at the Children’s Hospital of Wales.

Their mission is to make life easier for children and their families so that they can give their all to their treatment without letting anything else get in their way. With a catchment area of Chepstow to Aberystwyth, resulting in approximately 70 new cases diagnosed annually, this is no easy feat!

LATCH recognise that having a child diagnosed with cancer or leukaemia comes as a devastating blow and that the months or maybe years of treatment and ‘the unknown’ can take its toll on families. Caring for a child during treatment is hard on all the family. Finances are often a worry as parents will often have to take time off work to support their child. Family relationships can suffer too, as the emotional pressure takes its toll and everyday life is turned upside down.

When a child has been diagnosed with cancer or leukaemia, the chemotherapy treatment can last from six months to three years depending on the type. Follow up treatment and check-ups mean that a child who has been diagnosed with cancer will be under medical supervision for over 5 years.

This is a long and tiring road for the whole family, but, thanks to charities like LATCH, not one they need travel alone.

LATCH is most well-known for its on-Site Family Accommodation at the University Hospital of Wales, Cardiff which aims to support families to stay together during their child’s stay in hospital. This is an undoubted lifeline especially for those travelling from as far as North Wales to receive treatment.

LATCH provides an array of invaluable services including:

• A vital Social Work Service there to provide practical, emotional and financial support in a confidential environment.

• A range of financial Support through grants – this can be for travel, food, even rent in some cases. When a child goes through cancer or leukaemia treatment, families often face higher heating bills for example, and many parents have to give up work to care for a sick child. Last year alone, over £300,000 was awarded to families in the form of financial grants.

• Emotional Support for Parents and siblings in the form of counselling and alternative therapies, support groups, as well as one to one session.

• Much needed treats and get-togethers for the parents such as pamper days for the mums and golf days for the dads. Being with people in a similar situation often helps and just doing something different can act as a much-needed tonic.

• Holiday grants or the option to use their three caravans, and provides a number of excursions for children to Lego Land, Build a Bear and other venues to provide a touch of normality or a well needed escape from ongoing treatment.

• Benefits Advice • Advocacy • Signposting • Ward-based family Support Workers • And much more! Jo recounts: “LATCH has helped so much giving Issac’s family breaks when needed and the support is incredible, the love and attention they give Issac is absolutely amazing.”

Obviously being able to provide these incredible avenues of support mean that funds are required. LATCH needs to raise on average £700,000 a year to cover the costs of supporting families. With no paid fundraisers they rely heavily on the hard work of volunteers and remain proud to have one of the lowest management expenses for a charity in the whole of the UK. It’s only thanks to individuals and organisations up and down the country that help raise vital funds that these services have helped, and continue to help, countless families across Wales when they are most in need.

Jo and Jason are really keen to raise funds for LATCH through braving the heights and weathers of Pen Y Fan on March 9th 2022 at 12pm. Donations really do make a huge difference and they encourage anyone who is able to, to consider supporting the charity to help families in a similar situation.

Did you know that?

• During treatment, a child may need to use a specialised buggy to help with mobility. LATCH provides specialised buggies at a cost of £250 each.

• LATCH provides on-site family accommodation so that families can stay together during treatment. To run and maintain this facility costs £30,000 per year.

• LATCH will often fund medical equipment for the

Oncology Unit. New infusion pumps for chemotherapy costs £5000 each.

• LATCH spends on average every year £700 replacing and updating computer gaming consoles to keep the children occupied on the ward.

• To provide two family support workers who help the families in the afternoons, early evening and weekends costs LATCH £30,000.

• After the emotional and disruptive time in hospital,

LATCH gives all families a grant of £500 a year to put towards a well-deserved holiday.

So, as you can see, every penny is money well spent!

If you do feel able to support LATCH in any way please log onto: www.latchwales.org

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