Before we get to that, I figure that you might like to know some details about Lucy's diagnosis.
There are 2 main types of leukemia - she has the type known as Acute Myeloid Leukemia (and also Myelodysplasia which is some related thing I don't really understand yet!) and it's commonly called AML (the other one is ALL which is Acute Lympho-something Leukemia).
I think that in the general population ALL is the more common kind, and generally the "better" kind of leukemia to have. However, for little people with Down Syndrome, AML is more common and better. The drug protocol we have been given outlining the course of chemo Lucy will have says "since the early 1990's, it has been recognised that Down Syndrome children with AML have extremely high event-free survival rates and lower relapse rates compared with non-DS children with AML." It seems that the 'cure' rate is as high as 90% - at least 80% if not 90%, which is GREAT news for Lucy and us. The doctors are all very very positive, and are aiming for cure with Lucy. Of course there are no guarantees, but the prognosis at this stage is extremely positive. It's a funny thing that down syndrome in some ways pre-disposes you to leukemia, but in another way seems to help in responding to treatment.
Lots of people have also asked how we found out about Lucy's leukemia.
Some of you may know or remember that when she was born she had a blood disorder that was a kind of passing leukemia. It was, in it's nature, passing, and it did go away as expected. The doctors told us that having had that disorder, Lucy would have a chance of developing leukemia of about 30%. They told us particularly to look out for little red spots on Lucy's skin, which would be a sign of low blood counts.
About 2 months ago, I noticed Lucy had some red spots on her legs. She had a cold, and although a blood test showed her platelets were low, all the other levels in her blood were fine, and the haemetologist was pretty sure the drop in platelets was caused by the virus. However, Lucy recovered from the virus, but her platelet levels didn't improve. They seemed stable, just low, and we were told to just have another blood test in a month. That month came up last Friday, and I took her along for the blood test. Later that day I got that phone call no parent wants to get, when I was told things weren't looking good, and that the haemetologist was looking into it further. Another half an hour, and I was asked to bring Lucy straight to emergency at Westmead Children's Hospital, and it was highly likely that she had leukemia.
I drove out here in the pouring rain, crying and praying all the way. It felt like one of those awful scenes in movies when things are going badly and the rain is bucketing down. Once we got to emergency, a bone biopsy confirmed the leukemia diagnosis. It was originally called a "pre-leukemic phase" as the percentage of leukemia cells was not high enough to call fully blown leukemia, but the subsequent diagnosis of myelodysplasia meant they stopped calling it 'pre' and just call it leukemia now.
Not much happened over the weekend - as the number of leukemia cells was low, there wasn't an urgent need to rush into treatment immediately. We even got to go home for a bit on Monday and the whole day on Tuesday. On Wednesday Lucy had an operation to put in a Central Line, have a Lumbar Puncture and further bone biopsy. The central line is a tube that is inserted into a major vein and through which the chemo can be administered, fluids maintained, and blood can be drawn. Hopefully the one line will stay in for her entire treatment which is probably about 6 or 7 months.
Chemotherapy started on Thursday, and in this first cycle she will have 4 days of continuous treatment thru the line. Then she will have at least 24 days recovery - which is when, as far as I understand, she could start feeling really revolting and she will be closely monitored for infections and other side effects. For this cycle, she will be in hospital for the whole time. Once she starts recovering, the second cycle of treatment will start. Each treatment is different in terms of how long the drug is administered etc. Depending how she goes, we may be able to go home after that second cycle and then be treated through the oncology clinic.
Alright, enough for now. We have certainly reached saturation point with information at various points and I'm sure that's enough for you! Hope that helps in understanding where things are at.
I just met another family whose 6 year old son has just been diagnosed with ALL. Looking very wiped out, no doubt just as we did. I've been feeling a lot better and stronger the last day or two - so thanks for your words of encouragement, your support and your prayers!