Consolidation so far

The phase of treatment that we are in is called Consolidation - another very intense phase aimed at getting rid of the cancerous cells. I don’t know if I’ve mentioned on here before that overall treatment lasts 2-2.5 years, with the first 8-12 months being the most intense and sometimes termed ‘frontline’. This is a long effing haul and we’ve only really just begun. But I have to keep going back to day by day, sometimes hour by hour. 

The first block of this phase has been weekly lumbar punctures (LPs) where they deliver intrathecal chemo to keep the cancer out of the central nervous system as well as weekly IV chemotherapy to try and zero what cancer is left after Induction. So Emma had had 3 of the 4 of these weeks completed, we were due to go to clinic this past Friday to complete the last treatment and LP of this block (Emma, like most kids, does not like the LPs, mostly because of the way she feels when she wakes up after the sedative that they give) and had been dreading it like every Thurs evening. 

But things veered a bit off course when Emma woke up with some neurological symptoms on Friday morning and we ended up in ER and then admitted over the weekend - turns out the symptoms were because of a build up of methotrexate (the chemo that they have been delivering during the LPs). This cleared over time and there is a clear plan for how to prevent this from happening again. On top of this, she spiked a fever in ER, which is common for leukemia patients, but considered a bit of an emergency as a fever is a sign of infection, where, in leukemia and the treatment for it, the immune system is completely wiped out, leaving no ability to fight any infection. For both reasons, she was admitted over the weekend. 

As I mentioned, this phase of treatment is intense and the chemo regimen decreases appetite, which has happened in a big way the last couple of weeks. Due to this, and I think this is fairly common, they decided it was time to place a nasogastric tube to be able to deliver nutrition that way, to help supplement whatever Emma is able to/wants to eat and help support keeping her body as strong as possible, all things considered. 

You could try to imagine how distressing this would be for an 11 year old to have put in - it has been a challenging time to say the very least. It has been a difficult adjustment for her, but she is already getting there with it and soon I’m sure she will feel the increased energy from more nutrition. 

Emma is so so strong. I see her fierceness and fighting spirit and I know she will get through this. Once we got home from the hospital yesterday, she settled in and felt up to walking to the corner store with her bestie. 100% heartwarming and I felt such relief at this seemingly small (but actually hugely significant) event. 

To leave this post on a positive note - Emma has been doing weekly equine therapy visits at Circle R ranch. She looks forward all week to this and this past session was simply heartwarming. We can see her whole being energized and her cup filled by these visits. 

As always, the support we continue to receive is incredible and beautiful and so appreciated - thank you. One of Emma’s cousin in Australia - 11 year old Jaxson - is shaving his head in support of Emma and to raise money for the Australian Leukemia Foundation. Thank you Jaxson, what a sweet and powerful way to show your support. See the link here to donate: https://secure.leukaemiafoundation.org.au/registrant/FundraisingPage.aspx?RegistrationID=892072&fbclid=IwAR0hvJvYCfcXnPo5-gA7Oaf77EYf2XcHTn7OGe7DaZ1IN-INH2seLrALGk0