Parents of children with cancer

This group is designed to provide support to parents who are struggling with their child's cancer. This includes adult children who have cancer.

Advice about leukemia please? 7 month old son

Lucy0108
Posted by

Hi, really hoping someone could give some advice please as I'm just about to hit breaking point. Sorry this is quite long but I just want to be as detailed as possible. So basically nearly 4 weeks ago, my 7 month old son had what can only be described as a seizure, I took him to the hospital were they did a blood test. They said that they thought the seizure was probably just a one of but they had noticed some abnormalities in his blood, so they would need redoing in a week's time. This was a Wednesday. The following Tuesday they rang and asked if I would come back to have them repeated, I went down and they did them again and they came back abnormal again, they then said he either has an infection or leukemia so he would need to be admitted and have more blood tests done. Now I'm no doctor but he's not been unwell at all not even a slightly high temperature, infact he's the happiest most content baby I have ever known. So long story short after three days in hospital they said they couldn't see any leukemia and it was probably an infection (but didn't give him anything to clear the infection) they said he could go home but would need to come back for bloods repeating in 2 and half weeks (4 days from today) I asked the doctor: what do we do if he comes back and his blood is still abnormal and she replied with: I will discuss that if it happens (with a bad look in her face) now I know all I can really do is wait the 4 days and see but I already suffer with anxiety and I'm not sleeping or eating because my gut is just telling me something isn't right. He hasn't got any symptoms that I can see of Leukemia but obviously he can't speak or tell me he's in pain but he also has no symptoms of an infection, I just don't know I can go on waiting like this, I'm hoping someone here can give any advice or share a similar story, although I pray and pray it isn't leukemia I would rather know than not, so thanks for reading and please if you know anything I would really appreciate it x

src60
Posted by

Hi  welcome to the community though so sorry to read about what you are going through, not something I can absolutely relate to as my wife has cancer rather than my son.

First and foremost no need to apologize on here, we have all been in the limbo of waiting first for diagnosis, then treatment etc etc - we understand those feelings really well. With my wife the journey from her first being unwell to finally getting a diagnosis was so long and fraught with false turns that is a wonder either of us survived - but that is another story.

The good news for your son is that they are puzzled - if it does turn out to be Leukemia then it looks like it must be at the very earliest stages and of course it could be that that has combined with an infection to confuse things even more. I think it might help you to speak to someone about how you feel so that you can be there for your son. The obvious choice is your GP but of course they will probably not have much time, perhaps instead it might be helpful to ring the helpline here, sorry they are not open until Monday now but if you ring 0808 808 000 between 9am and 8pm on Monday-Friday there are real experts waiting to talk and it is a free phone call too. I know I have cried at them in the past - they are also very patient.

<<hugs>>

Steve