Sunday, November 20, 2016

Mood Swings...and I'm not talking about Ellie

The last four days have been hard. I hesitate to even write this, especially in light of my post yesterday. It is so easy to compare our family's struggles with others and think, "It's ok. It's not THAT hard." But, the primary purpose of this blog is to document Ellie's treatment. Our journey. (Ugh...can someone give me a better word to use than that?) And in light of that, these four days have been very difficult for Ellie, and therefore hard on the rest of the family.

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:'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.

Ellie needs healing brought to her body. Mike and I need strength. Eva and Nora need understanding. Please pray specifically for these things for our family.  

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.


  1. Dear Yorks...
    I'm writing from Minnesota, a friend of Mandi's mother.
    My son was diagnosed with ALL at around the same age. I saw your blog, and I just wanted to reach out and give you a virtual hug. This is really hard. They say it will get better (and I promise it will), but for now, it's hard.

    Welcome to an elite club you never wanted to join... parents of kids with pediatric cancer. Ugh!

    Please be kind to yourselves (especially Jaclyn & Mike) while you navigate this tender time.

    I went to my caringbridge from when we were going through this, and I found this post, at close to where you are in treatment ...

    ----- "Good week for Noah should equal good week for Mom & Dad, but it hasn't. And this is the stuff which drives us batty! Let me speak for myself now. It leaves me feeling full of regret over all that I could have done, but wouldn't; all that I should have done, but couldn't; and all that I planned to do, and just didn't. I wish there was a way to feign the crisis in order to find that productive, focused self I once had as my constant companion.

    I just want the old me to show up, not this emotional, indecisive, tired, anxious shell of a woman whose been housing my harrowed soul these last several months. It's almost like an out-of-body experience...I am experiencing this life and witnessing my experience of this life all at the same time, and there's a little voice inside of me ready to protest at all times to say things like "hey, it's not really me". Okay, before you decide I'm nuts, I confess. I ate a bunch of hot tamales about 15 minutes ago, and I'm on a sugar high.

    Thanks for checking in and signing in. Saturday will mark 9 months that we've been riding this rollercoaster. The feedback we get from some people indicates that we should be used to this by now, so quit complaining. The feedback we get from others is reminicient of that which showed up early in all of this--people who are so ready for this to be over that they can't hear or understand that it's so very far from over. And that's why we're thankful for you. Your posts of empathy, humor and kindness, even just the "Hi" sentiments, send a message to us that we're loved, we're not faking this, and most of all, that we're not alone."-----

    I don't know if any of that resonates for you.

    Sending love and prayers, healing and light from someone who has been there.

    Lori in MN

  2. Lori,

    Wow...there are so many things that I want to say in response to this, but fear I won't get it all out. You know, because I definitely feel like a shell of my former self.

    First of all, thank you so much for taking the time to reach out to our family. It's so easy for people to read, but difficult sometimes to engage. (I am guilty of this too!) So, thank you very much for your sweet and thoughtful comment.

    Yes. Yes to every single thing that you posted. There is constant guilt. I do not feel like myself. It's been 8 months, and Ellie is still not half way done with treatment. Yes, yes, yes. Thank you for so pointedly expressing another side of this that I have yet to share. I appreciate and understand every single word.

    I hate being in this club. But goodness gracious, has it made me a more caring and thoughtful individual. I am choosing to cling to that when it seems impossible to move on.

    I hope and pray that your son continues to thrive every single day. May you all have a Happy Thanksgiving!