Hi newbie here,
my daughter was diagnosed with leukaemia at 5 months old...
At 6 weeks old she started showing signs that something wasn’t right... she had blueberry muffin marks on her skin (we didn’t know that’s what it was at the time) took her to the doctors on more the one occasion and was accused of abuse, she showed low neutrophils and was told this was normal and sent on our way, she was bitten by an insect and nearly died of sepsis a month later.
Fast forward months later and when I took her to a different hospital in a neighbouring city she was diagnosed with AML, she was now 5 months old. We battled 4 rounds of intense chemotherapy and achieved remission in the second round..finishing formal treatment a week before her first birthday in may.
End of august was her first BM test and it had returned.. this time also in her spinal fluid, to say I’m devastated for my now 15month old is an understatement. Currently sat in the hospital room watching her sleep and writing to you all. We’re waiting still for her count recovery..she’s had her recent lumber puncture which finally is negative for leukaemia cells, so it’s a waiting game to see if her bone marrow will be clear in order to head for BMT.
I am terrified about heading to BMT, I think this is her last chance and I know the process is so dangerous in itself. In truth I’m scared of entering that hospital and her never coming out again. I’m worried that she will be in pain and that she won’t be able to tell me....
Hi and welcome to the Online Community, although I am always sorry to see folks finding us and so sorry to hear about your daughters AML diagnosis and that she is moving toward Bone Marrow Transplant.
This is hard to hear about a little one fighting a blood cancer, I myself have lived with a rare type of Lymphoma for over 20 years and have been through two donor Stem Cell Transplants (often called Bone Marrow Transplants by Consultants)
A cancer diagnosis brings a lot of confusion, stress and many questions but talking with other people who are on the same type of journey helps a lot.
As you have found out the Community has various cancer specific support groups and I see you have joined our Acute myeloid leukaemia group.
We also have our dedicated Stem cell transplant group where folks who have been through SCT hang out and support each other. I have been helping in this group for over 3 years now and have no recollection of a child being treated but it does happen a lot, we also have our Parents of children with cancer group. These are all good places for you to connect with others walking the treatment journey both as patient or family.
Follow the links I've created above then choose ‘click to join' when the page opens.
You can then introduce yourself and post questions selecting '+New' or '+' (depending on your device) you can also join in with existing discussions by clicking on 'reply'.
The Macmillan Support Services provides lots of information. The service is open every day 8am to 8pm and it's free to call on 0808 808 00 00. Clicking here for more information.
You can also email them, use the online chat and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
Our Online Information and Support Section is a good place to find information covering diagnosis, treatments and pages covering most types of cancers.
Always around to help as best as I can.
All the very best and virtual ((hugs))
Bless you. Although most of us have in the SCT Group have a very good idea what a SCT/BMT journey is like your journey takes on a different dimension ((hugs))
