Granddaughter diagnosed with acute lymphoblastic leukaemia

[Nanny1952]

My 4 year old granddaughter was diagnosed with acute lymphoblastic leukaemia about 5 weeks ago. She has been in hospital on and off for about 4 weeks. She keeps getting infections and viruses and has had gruelling chemotherapy. She has a 5 year old brother and a 7 month old sister so life is fraught for them all. I am devastated for my granddaughter and for my son who I have always wanted to protect from the cruelty life can bestow. It would be nice if the family could meet others in the same situation or just be able to chat to people in the same boat.

[Marie_14]

Have you phoned Leukaemia. Care? They are very good and will help you in any way possible.

Marie (another nana). My husband had Leukaemia but a very rare one.

[Nanny1952 in reply to Marie_14]

Thank you for your reply and the numbers to ring. I hope your husband is recovering. Best wishes to you,

[2003UK]

Hi Nanny, I cannot imagine how you and all your family are feeling, you have all had a diagnosis that has rocked your meanings of life. I have Leukaemia, but I am not in your situation, however I have found although you might find people in a similar situation, every situation is unique, as might be a treatment regime. However the Leukaemia Care Charity is there for you for support and advice:

Email: [e-mail]

Freephone helpline: 08088 010 444

Opening times: Monday to Friday 8:30am - 5.30pm & Thursday and Friday evenings 7:00pm - 10:00pm

What I have found though is that we all seem to share similar fears, what if's, thoughts and feelings whizzing around in our heads and perhaps what might help you all is if you can just be there for them all emotionally and physically and keep the lines of communication open. Take care of yourself too and keep posting.

[Nanny1952 in reply to 2003UK]

Thank you for your reply. I do hope that you are making a good recovery and not finding the treatment too distressing. It is hard going for us all at the moment but hopefully things will improve.

[Cycling08]

My granddaughter was diagnosed with acute Myloid leukaemia just before her 1st birthday last October. As you say it is a shocking and devestating time for the whole family. My son and his wife had recently separated and they also have a 5 year old son, every member of the family was affected . As a grandmother all you wish is that it was you. Keep strong , you will be such an important part of the caring network that is needed to support your son and his family. We had a WhatsApp group of friends and family for hospital visiting, picking up from school, providing meals and hospital food, babysitting etc Supporting with practical things will help you through. Our lives were on hold for 6months during the intensive chemotherapy treatment. It has been a roller coaster ride . Now for the positive news. My granddaughter was being treated at Gosh - the jewel in our NHS crown. Two weeks ago she rang the end of treatment bell. She still has her Hickman line in and her bloods are being closely monitored. She is in remission and we have every hope that this will remain the case. Her hair is beginning to grow back, she is eating again and we have her home 💕. We are not out of the woods and won't be for several years but do not lose hope , cling to a bright future for your beloved granddaughter. There is help out there - clic Sargant were marvellous and my son and friends ran the London half marathon 2 weeks ago raising over £4,000 for them.

Lastly look after yourself. A close friend reminded me that when an airplane is in trouble and the oxygen masks fall you are told to put on yours first before helping those around you. I cry as I type this because I feel your pain and all those families out there going through this ordeal. Keep going, this day too will pass, all will be well.

Sending love to you all.

[Nanny1952 in reply to Cycling08]

Thank you for your reply. I am so pleased that your granddaughter is making good progress. It is a terrible time and such a shock. So kind of you to make time to reply. Love to you and your family.

[Cycling08 in reply to Nanny1952]

I have realised that your granddaughter has a different type of leukaemia to my granddaughter - who knew there were so many ? Your granddaughters treatment will be over a longer period of time but has a very high success rate . My granddaughters leukaemia required six month intensive chemotherapy and she was on a worldwide trial as her leukaemia has a higher percentage chance of recurring . I do hope you can find a grandmother to chat to, it was something I would have liked. Friends were amazing but sharing the experience with someone who knows would have been really helpful. Maybe this site could set up a grandparents page ? Take care. 💕

[NicoleLeukaemiaCare]

Hi there Nanny. Welcome to the community. I do hope talking to others provides some comfort.

If you wanted somebody else to talk to, we could seek a buddy for you - another grandparent that has been in a similar situation perhaps?

There will be so many needs for your family now - physical, financial and emotional.

If you are all making lots of trips to the hospital, parking etc, we have a new fund available for families where you can claim £200 towards your hospital travel expenses. You can apply on your granddaughters behalf. You can find more information here: leukaemiacare.org.uk/suppor...

Emotionally and psychologically the diagnosis will have blown a massive hole into the family. Our helpline is open five days per week - if somebody wants to just scream and cry down the phone, we are here to listen. Our nurses can offer medical advice but can just be a shoulder to cry on. Our help line is open Monday - Friday 9am - 5.30pm and there is a specialist nurse on the line for two evening shifts: Thursday and Friday, 7pm - 10pm. The number is free to call and is 08088010444.

There is a second pot of funding that your family may be interested in, which is a counselling fund. This is a maximum grant of £400 to fund up to 6 sessions of therapy. This could be relationship therapy, traditional counselling or cognitive behavioural therapy. Play therapy for the children. Counselling support for yourself. You may or may not feel like you need this now. However, if the family were interested in applying for this kind of support, you can find more information here: leukaemiacare.org.uk/suppor...

Take care of yourself too. Stay well, talk about how you feel with others and talk about it with your GP too.

[Nanny1952 in reply to NicoleLeukaemiaCare]

Thank you for your reply. It is good to know there is support available. It would be nice to talk to another grandmother in the same situation if there is one.