Day 3 Chemo 3
Good afternoon/evening to you all…
Chiane is doing ok. The chemo is intense and tomorrow will be her 3rd day on chemo 3 (Etoposide)… she has been on it since Tuesday non stop day and night and she should stop by tomorrow night 11 pm…. Then we will hold our breath… If she doesn’t develop a fever, then she will go home for a few days to rest. If she does develop a fever she will stay in hospital and start antibiotics again, like last time…
It is very very important that she doesn’t develop a fever…why? Because her neutrophil levels will be below 0.75…. What are neutrophils? They are cells that fight bacterial infections. Because the chemo wipes out her neutrophils, her body can’t fight infections… What happens then? She gets a fever and it just continues to go up and up until her organs begin to fail…. SO, to prevent her from getting to that fatal stage they give her antibiotics BUT only if she develops a fever (developing a fever means she has an infection and her body can’t fight it)… If she doesn’t develop a fever – we go home!
What is the normal level of neutrophils in the body – 1.5 to 6 x 1000000000 cells! Hers will be 0.75 x 100000000…. If she goes home we have to check her temperature every hour and it must stay below 37.8… If it goes above that we know she has an infection and because she is “neutropenic” we have to bring her back to the hospital ASAP to start antibiotics. What is neutropenic? It means your defence system is wiped out and you can die from an infection if it’s not treated until your neutrophil levels are normal again.
IF all goes well, Chiane will stop chemo tomorrow night. She should be home by Saturday evening. Fingers crossed!!!!!
How is she? She is doing ok…the chemo has hit her hard,, but she is still putting on a brave face. We are stretching her 3 times a day, and we as parents have so much to do now on a daily basis it becomes a full time “job”…
We have a check list… Gel the teeth, gums and mouth every 2 hours; stretching 3 times a day with 30min sessions, wrap her headband tight twice a day, motivate her to eat and drink (that is a full time thing as she is refusing to eat at the moment), Vaseline her lips every hour, use a protective bum cream (specially approved) to protect her skin from the chemo when she poos, check her temperature every hour, vitamins every 6 hours strictly, and and and and and….
We strictly follow the programme that we set out for her and it is helping… No mouth sores at the moment and her muscles are slowly becoming looser again…
She is tired… We can see it… It is very important that she can go home, so that she can escape the “abnormality” and remember there is a place like home.. With her bedroom and all her things untouched to recharge! SO, fingers crossed when the chemo stops that she won’t develop a fever like last week and Friday when they stopped chemo!
How is Estian. He started speech therapy today. THAT was chaos! Hahhahahhahahahh!!!!!! We watched him closely over the last 4 weeks and out of everyone, he has been affected the most. He doesn’t understand what is going on, because he is only 2 years old. He asks everyday “where is Chiane”… You explain it to him and 5 min later he will ask the same question again, and again, and again… We spend A LOT more time with him and we increased our attention we give him, but it still doesn’t help. Chances are that we will take Estian out of nursery, because he needs more attention and financially it’s becoming a challenge. Juggling our 2 kids now will be a challenge but we can not neglect Estian! We will just have to rise to the challenges ahead and grab the bull by the horns!!!!! I work when I can between all this, an hour here, 5 hours there, 2 hours here, 4 hours there… Mostly at night time when the kids are sleeping, or getting up in the early hours and work a few hours before they wake up. The journey continues and we stay positive, motivated, we believe and we make them laugh as much as we can. Research is continuing regarding alternative medicine and supplements to support her treatment plan, and she already started a strict diet that we implemented. Andia is doing a lot of the research at the moment to buy me time to work when I can.
We realised you CAN NOT plan one day ahead as things change by the hour… That is a very hard “way to live”, especially if you are a structured, organised and always a planning ahead person! We have to bend and be flexible and everyone is learning/changing/adopting at the moment. Patience…. Patience… Patience…. It is so important! The only thing we follow strictly is her routine, and spending as much time with Estian as possible, and juggling work and research. It is hard BUT we do it with smiles on our faces!!!! My dad used to say to my brother and I when we were young boys:
“remember this, one day I will not be there anymore, and as the years go by you will become older like an old reliable truck or “bakkie”; the body work might go rusty over the years, but the engine, the heart that drives that old car must be strong and must be reliable. Your body work will give in as you get older but the heart must never!”
My breaks have “failed” and I’m steaming ahead! If we suggest something to higher level and they say no, I find someone that can give me “solutions”… I don’t like the word “no you can’t do this or that”… I surround myself with positive people that say to me you can’t do this or that BUT what we can do is this or that as an alternative…” I believe Chiane will make this… We will give her everything we can to help her have a “fair” fight at Goliath!!!!!! Forward is the only way, not sideways, not backwards and if someone is not a team player I sidestep them and ask the next level of authority until I get answers and solution. We owe Chiane that!
We know what lays ahead next week but I will explain it tomorrow.
Thank you all for your prayers and warmth/kindness!
Chiane won’t be sending an email today, she is already sleeping and very, very tired/drained.