My baby girl and us as a family

My partner Is unable to work due to being at the hospital everyday and we're currently living off my maternity pay and SSP as this is all he's entitled too

On the 22nd of September I felt a lump under the skin on Amayah's left forehead. We rang 111 and was told to take her into A&E. Amayah was admitted to dolphin ward where they CT scanned her head because they thought we had fractured her skull. We were told if her skull was fractured that they would be getting social services involved and she expressed this in a very aggressive demeanour.

When that came back and they realised it wasn't the case they gave an ultrasound and we was told they wasn't sure what this was but believed it was a cyst and the lump was just filled with fluid. They did bloods however these had clotted so we didn't receive results. I asked the consultant 3 times if they needed repeating to which she responded no as there were no signs of bruising.

Before being discharged on the 25th of September I told the consultant I believed the lump was growing to which her response was "I had been looking at it too long" and I asked what I should do if it grows any bigger I was told if anything changes, the lump grows or any more appear before your follow up appointment on 12th November to come back .

The following week you could tell it had grown considerably more. We took her back to A&E ( 3rd of October ) where they gave her another ultrasound and was discharged before we was even given the results and Amayah was discharged again on the basis of neurologically she was fine.

The following day (4th of October ) I contacted our GP as I felt my daughter was being neglected and none of us were being taken seriously. The GP doctor took a look at the ultrasound and found red blood vessles from the most recent one taken on our second visit in which we was discharge before even receiving results. He told me I don't want to alarm you but I believe this is potentially cancerous. The GP emergency referred her to the hospital to which the Royal Derby Hospital rejected.

We took her straight back to A&E after our GP phone call and after waiting 2 hours I finally received a call from a doctor around 4pm at the hospital to update me on the result from the ultrasound from the previous day. Where I was told that this was a form of a cyst and was not cancerous and she understands I'm a new mum and that I was just worried.

The following week another lump appeared on Amayah's head ( 9th of October ) due to not being taken seriously the first time and being made to feel I was over reacting I consoled family and close friends on their opinion as I wasn't sure if her soft spot was sunken. After being reassured by multiple people it was definitely a lump we took her back to A&E ( 10th of October ) where she was examined by a doctor and deemed neurologically fine again and I was told they understand I'm a new mum and worried.

The following day ( 11th of October ) I took her back to our GP as I still felt we wasn't being taken seriously even though I told them I thought something was seriously wrong and I was worried.

This time we saw a different GP doctor there who examined her and contacted the hospital who was reassured by duty consultants from children's A&E that the lumps were not showing any signs of anything serious and to wait for our follow up appointment.

That evening after seeing the doctor at our GP I found another lump on the back of Amayah's head. Then just one day later ( 13th of October ) one appeared in Amayahs mouth which was clearly affecting Amayah to feed fully.

I contacted the GP on the Monday morning ( 14th of October ) and got an appointment with the doctor who originally said this was potentially cancerous, after examining her he told us to take Amayah back to A&E yet again.

The doctor contacted the hospital while I was present and had them on loud speaker, to inform them we were bringing her back.

Their response was "the lady who keeps making such a fuss" the doctor explained I was extremely upset and concerned and he said that I had every right to be and told her I was present in the room to which she then said " well yes tell her to come back but I doubt we will be able to do anything about this tonight"

We took her back and she was examined by a doctor who told us that medically she only required 4 ounces every 3 hours even though she had previously been taking 6 ounces every 3 hours prior to the lump in her mouth. I expressed that she was below even the 4 ounces every 3 hour requirement to which he then went off and came back to tell us it was only a concern if she began drinking less than 50% of the medical requirement which to them was 502ml. The doctor also prescribe a spray called oromucosal spray (benzydamine hydrochloride) which he told is usually used to treat patients with tonsillitis and told us to spray this on Amayah's lump in her mouth 10 minutes before every feed and keep on top of calpol paracetamol.

Three days go by and each day Amayah is feeding less and less and clearly deteriorating which brought us to the 17th of October when Amayah drank enough for them to finally be concerned and admit her. She had a feeding tube fitted and then required oxygen as her saturations were dropping.

The following day they finally repeated her bloods and x-rayed her chest and stomach. To which they found she had fluid on her chest & a lump in her stomach and one attached to her kidney. The following day we was told in Amayahs blood a marker flagged up which does this when someone has cancer and was told she had a possibility of having three different types of cancer.

Each day Amayah was deteriorating more and more, she was finally transferred to QMC.

She was sedated for a biopsy, bone marrow and a central line/hickman to be put in.

They were then unable to take her off sedatives due to her having breathing difficulties and Amayah was put on a ventilator to support her breathing, which at one point Amayah required full support and was unable to breathe for herself.

That night Amayah was given muscle relaxant to paralyse her as she was fighting the help QMC were trying to give her.

After waiting days for results, Amayah needing a catheter, x2 xblood transfusion, chest drain fitted and medication to help her urinate, get her calcium up, potassium and fight infections as well as all the sedatives such as morphine, midazolam, clonidine and ketamine.

We have been told Amayah for sure has cancer but they believe it's a rare type of leukemia possibly (AML) and no oncologist in QMC has seen this before. Amayah has started chemo and so far has had one round of one chemo and then 3 different types of chemo after altogether. They now need to give Amayah a break for 14 days as they have hit her hard with lost of different chemo trying their best to help treat and save her.

Amayah's oncologist told us they would never normally treat a patient before a diagnosis but in this case she was too poorly to wait for that and could have potentially died waiting for treatment.

But this is trial and error, without a full diagnosis they're unsure which is the correct treatment.

Her kidney & spleen is now enlarged and she may face a drain in her stomach or dialysis to control the fluid overload in her body. She has been given enormous amounts of frusemide to help her urinate out the fluid overload.

My daughter was on a ventillator to help her breathe for 8 days and is now suffering from withdrawals after all the medication they needed to give her to keep her sedated, my baby is crying out in pain and got help and there's nothing I can do except try to soothe her. Amayah's bum and vagina skin is completely broken and peeling from all the medication giving her such bad loose stools and all the frusomide making her urinate so much.

There's two more test QMC can preform which is breaking down the DNA of the cancer too see if this gives them anymore answers, this can take up to 10 days. As well as a comparison of the tumour DNA compared to a sample of Amayah's "normal" DNA which they have told us they will take from her leg which she can't be sedated for as this is what put her on a ventilator in the first place.

This test takes 4-6 weeks for result to come back. QMC have also sent off her sample to great old man street which I believe is London & Manchester which we await results from.

If Royal Derby Hospital had just reapeated her full blood work or not turned us away every time, neglecting my daughter and my concerns telling them again and again she didn't seem ok. They would have found this 6 weeks ago.

I'm genuinely at breaking point and just want answers my heart is in pieces and I just honestly wish it could be me instead of her.

I hope that when Amayah is better I can fight for her and stop the doctors that neglected her and stopped her from being treated from this early on instead of letting her deteriorate.

Children and babies having cancer is a real thing and before it happened to my baby girl I didn't think it was and clearly neither did any of the consultants or doctors at Derby before It was too late and my daughter got so poorly.

Something seriously needs to change and mums in general new or mums with more children need to be taken more seriously instead of being treated as though we are overreacting and like we are insane, because for a while I felt like that but it didn't stop me fighting to get my daughter help because my motherly instinct told me she wasn't right even though for 3 weeks out of the 5 until they found it she didn't show any signs other than tumours on her head in which I was told they were just cysts and nothing to worry about.

I have spoken to many mums on the ward Amayah is currently on about what happened to my poor baby and they have shared with me that the same has happened to their child too which have come from many different cities.

Trust yourself ladies you know your child better than anyone.

Fight for them because they can't fight for themselves ❤️