Ellie is not feeling well right now. Her platelets have not dropped enough to produce bruises and bleeding, and she hasn't had a high enough fever to warrant taking her to the hospital. But she looks terrible with pale skin and sunken eyes, she has had a constant low grade fever, she has pain all over her body, she is not sleeping well, she has mouth sores, and I can hold in my hand the amount of food she has eaten in the past four days. She vomited once yesterday and twice today, but since she's not eating, only mucous comes up. Her taste buds are done. She wants to eat, constantly asks to eat, but nothing tastes good to her and everything causes her pain.
She's back on medicine to try and alleviate these symptoms.
Bactrim: that's a standard treatment antibiotic to prevent a lung infection
Periactin: help stimulate appetite
Pepcid: for ulcers that are forming in her digestive tract
Zofran: anti-nausea...it's not really working right now
Ativan: to calm her down and help her sleep
Tylenol: body aches and pains
We feel done.
But, we are only 8 months into this. Ellie still has 19 more months to go. So, we keep going.
When Ellie was first diagnosed, Maintenance felt like an impossible dream. But if we reached it, life would be so much better! Ellie would be so much better! Maintenance is now less than a month away and we are realizing that this is not the case. Yes, Maintenance is a big deal, because it's a big milestone. It means that the most intense period of treatment is over. But that does not mean it is any less harsh. I was confusing intense with harsh.
Will Ellie have to go to the hospital, on average, every week? No, she will only have to go once a month. But that's because she will be receiving oral chemo daily at home. Did you get that? We will have to give our daughter chemotherapy every day for 18 months. And that's in addition to the other medications that she will receive, both at home and at her hospital visits.
So yeah, it gets easier, but only if easier means less hospital visits. It will still be incredibly hard for Ellie. Chemo drugs will be wrecking her body daily, and steroids get their turn monthly.
We are tired. All of us. Both Eva and Nora struggle and fight for our attention. I know it will get better, but right now it is hard. I really want to convey the good with the bad. Cancer sucks, no matter the diagnosis. Most of the pictures you may see only show the good, or perceived good. But please know, this is hard. If you know of any parent fighting along with their child during cancer treatment, please give them a hug, send them a funny text or drop off a coffee. Trust me, they need it.
In the interest of ending this post on a lighter note, this is what the majority of my day consisted of. You know, in between all of the other stuff that I mentioned above.
For giving me a joyful pause within these past few days, thank you Nahal for sending me this book. It was the most wonderful surprise!
And finally, last night for about an hour, Ellie felt well enough to celebrate Uncle Casey's birthday.
I am likely taking Ellie to the hospital tomorrow. Please pray it does not become an extended hospital visit. Pray that we can all be together for Thanksgiving.