Day +10

Well, this is really tough. I don't know what else to say.

It's been10 days since the last update when the stem cells were pushed into Ellie's body via her central line.  Days +1 to +5 were pretty good. She was pretty upbeat, in and out of bed, doing activities chatty, and eating and drinking. But, then on Day +6, things started to turn. More meds as per the program were introduced, and the mucositis in Ellie's mouth started to develop. The past 4 days have been awful, with Ellie at her lowest point since relapse. She won't speak very much due to the pain in her mouth. She often lies in bed doing nothing as she has no desire to engage in activities and she is sleeping quite a lot. Her BP is elevated and she was started on an anti-hypertensive, Amlodipine. This has just been increased today as she was requiring even more medication for breakthrough hypertension (Nifedipine). She was started on a Fentanyl PCA bolus only, but that was quickly increased to include a background (constant dose) plus the bolus dose that she can deliver herself with the click of a button when she needs it. She is good about using this as needed, before getting out of bed to go to the toilet or as she is waking up in the morning. Her urine output has glucose and protein in it and the team is watching her closely for any declining function in her kidneys. She is already on defibritide to protect her from veno-occlusive disease (as mentioned in a previous post) but more may need to be done. Her blood sugars are going up marginally as a side effect from the steroids she has now started. She will require insulin if this continues. 

Besides the gross physical toll right now, the mental toll is what is equally worrisome and challenging. Ellie had/has started shutting down from communicating again. Similar to when she as first diagnosed. We never thought it would get that bad again. And whilst she will speak here and there, she is often displaying anger by snapping at us or being silent or growly.  This mainly happens when we make her do one of the many daily tasks related to her hygeine. She must do a 3 step mouth care 3-4 times a day as her mouth is ulcerated and blistered on the inside. She must shower and wash her hair every day, which she does in a shower chair as she is too weak to walk or stand very long. We also ensure her sheets are changed daily and wipe down all surfaces in her room daily. 

I, personally, have found this week to be one of the toughest we've faced. It's hard to quantify what makes one terrible week worse than another terrible week (Ellie was in ICU at one time, remember). But, perhaps it's the fact that everything is piling up and adding up and the pain and anguish is compounding. Seeing our daughter continually in pain, having so many medications put into her body, each with dangerous, potentially long term side effects, and her being isolated within these four walls of her hospital room is why I'm struggling. Paul and I continually liken this process to a marathon and we're getting tired. My stamina is running out and I sometimes I feel like I'm hanging on by a thread. 

But on a lighter note, thank you to everyone who is constantly supporting us. Without the love, encouragement and support of you, are treasured family and friends, I don't know where we would be. Thank you to Marilyn for for being with us day in and day out, rotating shifts at the hospital, for taking Annabelle to and from school, for packing her lunch every day, helping run her to netball and swimming, for doing ALL the laundry, for cleaning the house, for doing all the dishes, for taking care of the dogs, feeding them, walking them, doing poop duty, for pouring me a glass of wine when I come home from work, and lighting the candles to help me relax. No joke, this woman is incredible and the best mother in law a girl could ask for. Thank you to my parents, Mom, Dad and BK for always being available to talk to, to listen, to cry with. To Mom for coming over here to help us (and again in October!) and to Dad and BK for coming in December. We can't wait to see each of you again! Thank you to my amazing nursing team for always being there for me: Kathy, Max, Zoe, Renae...you always make me laugh and there is no one I'd rather work with. And to ALL of my work colleagues (esp Leonie) who put together the most incredible pamper hamper for the whole family. We are so grateful! Thank you to the incredible St Andrew's school community who has been providing us with a dinner every single night since the lovely Sarah Stewart set up the Meal Train for us in May. This generosity has absolutely blown us away and has immensely helped ease the burden of managing everything. Thank you to all of our friends old and new, near and far for the calls and messages on FB, Instagram, messenger, WhatsApp, Viber and the regular old phone. 

That's all for today. We will post another update at Day 14 +. Please continue to keep Ellie in your prayers. xx