Blood rage

Vega is in hospital. She is very unwell. As we don’t do things by halves, Vega got sick on Lyra’s 8th birthday on Friday. Ray took her to Kings in the night, and I stayed home because Lyra had a sleepover at the Zoo on Saturday night, her birthday treat with two friends. I had to go to the Zoo with them, Alys at just 2 had her first ever sleepover. I was stressed. Ray tried to relay information to me but was bombarded with scary facts and medical googlyhoop, while dealing with a poorly Vega.

The weekend passed, the girls had a good time at the Zoo, Alys did so very well and Ray muddled through. We swapped yesterday so Ray could get back to work today, the other girls are once again with Beccy.

Vega started her last full Maintenance cycle two weeks ago and I knew we had trouble on our hands. She was worse than ever, itching, screaming, throwing things and slapping me. She was in total hysterics. I spoke to our nurses twice during the steroid week, I was worried and also utterly overwhelmed by Vega’s outbursts. All her dosages were increased so I was informed this terrible behaviour was because of that. But whereas we usually see an improvement once the steroids stop, Vega just continued to be whiny and tired last week. She developed ulcers on her lips and soon on her tongue again, too. Then on Friday the fever started and she and Ray went off to Kings. Saturday her nose and mouth started to bleed excessively and her mouth was very sore. She has full blown mucositis again, and won’t eat or drink. Her bloods dropped. All of them. Neutrophils are below 0.05. Platelets below 50. Red cells under 5. You can scroll back to the beginning of the blog to have look at a “what’s normal” range. Her clotting factor was high, which apparently is bad, ie not clotting. I am still just beginning to understand. Due to the acute state of her health she was put on everything, to nip anything possible in the butt. Antibiotics, antivirals, antifungals, painmeds, fluids, Vitamin K for clotting. The mucositis is top to bottom, sore mouth, throat, tummy and bum. Constipation because she doesn’t want to go to the loo. Every time she does go to the loo she is crying, nose starts bleeding, mouth starts bleeding, all in all a bloody hell.

She is having a blood transfusion as I type. Fever is still coming intermittently. We are waiting for cultures so we can stop all those meds, depending on what is ruled out. For now the diagnosis is chemotherapy poison, and her liver took a hard knock, hence the clotting and bleeding problems.

We used to deal with these kind of admissions a lot two years ago. This one though came as a bit of a shock. You just don’t expect to find yourself so neutropenic and hooked up onto a bag of blood 10 weeks before the end of treatment. I keep being told that this often happens towards the end, that the children are tolerating the chemo less and less, but this is pretty tough. Vega has not been this unwell in a long time, and we have not seen her subjected to as many investigations. The clotting and bleeding has been particularly worrying, and because they use Heparin (a blood thinner) to lock her central line, they were unsure if the remaining Hep in the line was affecting the results, so the decided to canulise her hand. Needless to say, Vega was very upset.

I am mainly tired and angry. I always feel angry seeing how the treatment is messing with my child. I wrote about this before, Vega being so ill not because she has cancer, but because she is being treated for it. Vega is also making me angry because she is so very stubborn and does not accept any of the little things that could help to make her feel better. Some Vaseline or numbing cream on her lips, drinking some water so she wouldn’t need to be on a drip, or eating in general! You can not argue with a poorly child though so I bite my tongue and let her be. I have to remind myself that I once wrote about finding the right balance to give her autonomy over her body and supporting/intervening when and where I can.

This will not be one of our three nighters. We will be here for a while, until the fevers are gone and the neutrophils are rising. I keep telling Vega she needs to breathe and stay calm whenever the nose or mouth start bleeding. I really need to take my own advice and breathe, too.

What I am wondering most of all is- whatever else is next?