Feeling overwhelmed waiting on child’s results

[Eode]

Hi**,**

I’m new here and honestly a bit nervous to post, but I’ve been feeling really alone and could use some support. My child has been unwell since October, and it’s been a rollercoaster.

We’ve seen the GP – initial bloods were normal except for raised liver function. He still wasn’t better, so we went to A&E. They did a full physical check but didn’t repeat bloods and said there was nothing urgent. We were referred to paediatrics.

The paediatrician ordered an abdominal scan (normal) and sent bloods for a blood film. She reassured me they don’t think it’s leukaemia, but they are testing for lymphoma.

Now I’m waiting for results and trying to keep life as normal as possible for him. But I’m torn – if he is seriously ill, am I putting him at more risk by letting him interact with others?

Has anyone else been through something similar? How did you cope with the waiting and uncertainty? Any advice or just words of encouragement would mean so much right now.

Thank you for reading

[Jules]

Morning and a very warm welcome to the forum. Please don’t be nervous about posting—that is exactly what we are here for. I am so sorry you and your son have been on such a difficult “rollercoaster” since October; the waiting and uncertainty are often the hardest parts of this entire journey.

Many of us find that the period before a diagnosis is the most stressful, as you’re trying to balance keeping life “normal” with the fear of the unknown.

Trying to keep life consistent is actually one of the best things you can do for a child. Routine provides them with a sense of security when the adults around them are worried.

Waiting for a bloods or biopsy results is agonising. Try to focus only on what is in your control the next 24 rather than looking too far ahead.

You don’t have to carry this worry alone. The Blood Cancer UK specialist nurses are wonderful and are there for people exactly in your position—those who are “worried about” or “waiting for” a diagnosis, not just those already diagnosed.

• Support Line: You can call them for free on 0808 2080 888. They can talk through the tests your son is having and help you manage the anxiety of the wait.

• Opening Hours: * Mon, Wed, Thu, Fri: 10am–4pm

• Tue: 10am–7pm

• Sat & Bank Holidays: 10am–1pm

• Email Support: If you prefer writing things down, you can email them at support@bloodcancer.org.uk.

Helpful Resources

You might find these pages helpful for understanding the process and finding ways to cope:

• Blood Cancer UK: Support for You

• Information on Lymphoma in Children (Lymphoma Action) — While this is a sister charity, they have excellent specific resources for parents.

Please keep talking to us here, you have a community here that understands exactly what that “rollercoaster” feels like.

[GenesisDevice]

Hello @Eode

Thank you for reaching out and posting on the forum.

I’m so sorry to learn of the circumstance you and your family are currently experiencing. It must be extremely difficult to know what to do for the best. That period between raising concerns, seeking medical advice and waiting for any test results can be the most difficult as I imagine your mind is racing, and it can feel like a rollercoaster as you say.

There is a whole community here, a high majority of us have our own medical conditions, I am one of those people, so I feel i can relate some what to that horrible period of time between tests and the results.

I echo all of the comments @Jules posted in the reply they sent you, and do encourage you to keep in touch and let us know how things go. Remember you are not alone and the forum is here for support, be in by message or by phone. We also have nurses you can interact with if your query becomes technical and you need some one with medical knowledge

Take good care of yourself, your son and your family

Kind regards

Mike

[Ceri_BloodCancerUK]

Hi @Eode, I’m really glad you found your way here, even though it took courage to post.

@Jules and @GenesisDevice have given you such thoughtful replies and excellent guidance, so I wanted to pick up on something specific you mentioned - that question about whether you’re putting your child at risk by letting him interact with others. That’s such a parent thing to worry about, isn’t it? It immediately resonated with me as a Mum.

From reading what you wrote, your paediatrician hasn’t advised you to limit his activities or keep him isolated, which suggests they’re not concerned about immediate risk from everyday interactions. I also agree with Jules about trying to keep life as normal as possible for him, even if it doesn’t feel that way for you right now during this worrying time.

The waiting is exhausting, I know. How are you managing to look after yourself through all of this? It’s easy to put yourself last when your child needs you, but you matter too.

Do keep us posted on how things are going. We’re here.

Take care,

Ceri - Blood Cancer UK Support Services