The Waiting Game, & 8 great stress busters

To be honest, it’s terrifying when something is amiss with your child, and you’re waiting on the results that may just totally impact on their lives – and yours.

At the moment, I have my heart, stomach… basically all my insides, living up near my throat. It’s either that feeling, or I do the head in the sand approach, and not wanting to think about it at all.

What are we waiting for?

Very recently, my daughter has been diagnosed with severe chronic neutropenia (I’ve written more here).  In a nutshell, neutropenia is a condition where there are too few neutrophils (a type of white blood cell) in a person’s body. Without enough neutrophils, it can be difficult for people with this condition to fight off infections.

It is classified into four distinct types:

？Autoimmune neutropenia is caused by an immune system malfunction, and often comes right in time, ie a couple of years optimistically.

？Congenital neutropenia is caused by an inherited genetic mutation, where she will have it for life and will most likely need a lot of management.

🆇 Cyclic neutropenia has an interval period of normal blood counts followed by several days where the white cell count falls dramatically lower than normal. She doesn’t have this one.

？Idiopathic neutropenia has no known cause, and we don’t know what this would mean for her.

Due to the longevity of her constant low neutrophil blood counts, her paediatric doctor liased with the specialist haematology team at Adelaide Women’s and Children’s Hospital. They recommended a genetic test, as they’re leaning to her condition being congenital.  I’m really hoping and praying for her case to be autoimmune, so that she won’t have a life that will be hindered.

Fortunately, a visiting team of geneticists from Melbourne came to Alice Springs, and Kaydes got a last minute spot, due to her case being quite urgent. That was 3.5 weeks ago now, and we are waiting on the results from the test performed then (just a cheek swab).  It will hopefully tell us whether her neutropenia is congenital or autoimmune in nature.  Then to see where we go from there.

Waiting… Processing…

They said the test will take around 3 weeks to do, and that’s a rush job. If it wasn’t urgent, it would take 6 months.

I do wonder why it takes a long time…  Is it because computers are scanning and that takes time? Or is it because they need the cheek swab to marinate more lol? One solo test runner? Or just in a line waiting on her turn?

Because there are so many what if’s at the moment, and I could spin out into worst case scenarios all too easily, I just don’t think about it too much. I had an endocrine appointment myself today, so since I was nearby to paeds, I did enquire whether any results where back – not yet.

There was some interesting information I did receive from Wellington Hospital a couple of weeks back. I had requested her newborn bloodwork, to see what her neutrophil count was, and it was a normal 7.1! (normal range is 1.5-9). She sits around 0.1-0.4 generally now. She’s once gotten back to 1.0, but she was unwell at that time 🤷🏼‍♀️

So I do hope that is indicative that her neutropenia is autoimmune, rather than maternal blood still being plentiful, and hiding the congenital nature.

8 methods that have helped with the stress:

• Sound-boarding with Mum has been the go to. She managed my condition, congenital Panhypopituitarism, for most of my life and kept me alive, so I figure she knows what she’s saying haha!
• Just being with my little girl, and making her (and myself) as happy as possible. Nurturing her development, and applauding at her amazing milestones – not far at all from walking!
• Hugging her and feeling the love radiate
• Working has been wonderful. I work part-time with just a wonderful team at a credit union, and I like being able to compartmentalise, and focus on other people and doing best by them.
• Chatting/hanging out with friends and family
• Walking and listening to music
• Doing some self-care, and getting my nails done, and eyebrows threaded – a bit of pain deference lol!
• Blobbing out to Netflix – I really enjoyed the first part of Harry & Meghan last night. House of Cards has been on the go, and I’m excited to watch Emily in Paris S3 next week!