What To Expect When You’re Expecting the Unexpected

Chillin’ through infusions and transfusions…

Our trip to the hospital this weekend was unscheduled, but it wasn’t completely unexpected.

Up until now–as we’ve made our decisions about Chase’s treatment plan/location–we haven’t said too much about AT/RT, but if you read “The Other Shoe” and googled that specific cancer, you probably already have an idea about what this looks like.

The truth is that AT/RT is very aggressive and doesn’t have a great prognosis (I won’t share the exact percentage here because Chase is either 100% with us, or he isn’t and that’s all that really matters). Regardless of statistics, Chase is a fighter, and the cancer’s aggressive nature requires an aggressive response.

Treatment of AT/RT is a little like a Looney Tunes-style destruction of cancer cells: they’re going to punch it, and then kick it off a cliff, and then half-way down the cliff, catch it and put it in a cannon and shoot it to the moon… then let it fall to earth to explode in a fiery ball of death in the side of a mountain (I’m picturing Wile E. Coyote in my head right now).

What this looks like in real life is: getting to know the hospital REALLY well. Chase’s treatment protocol is front-loaded to try and force a remission and so for almost the entire first half of the year-long period, he is scheduled to receive chemo every week (yes, every week).

Because of this, he is going to be in a pretty continual state of low immunity, which means he’s prone to every infection and will get fevers very easily.  Because of this, he will probably have a lot of unscheduled hospital visits (like this weekend) for antibiotics, transfusions, and extra monitoring.  Chase’s oncology team had been verbally preparing us for this from the first day. It doesn’t save us from seeing him in obvious pain in a hospital bed with a fever of 104, but it definitely helps prepare us to expect it.

Does it sound crazy? Yes, probably, but our son’s life is the answer to that question, so how could we ever NOT pursue this treatment.

I do not know how this year will end or what the long term effects will be on our family.

Here’s what I do know… We are going to get through it (let’s all say it together) …

Moment by moment through GRACE

The heart of man plans his way, but the LORD establishes his steps. –Proverbs 16:9

15 responses to “What To Expect When You’re Expecting the Unexpected

  1. praying for you.

    (friend of Angela Walters)

    Kathy

  2. Continuing to pray for you guys, as I was praying I was wondering if all this treatment will end up healing him, but if it is God’s will He will heal Chase. I also prayed for you and Bob and Chase that you would have times of rest.
    Let us know if we can be of any help even for your parents Ellie. We miss you all at church.

    Blessings,
    Julia

  3. You will get through it, friend. You make the best decisions you can for Chase, moment by moment. That’s all that matters. Here for you, whatever you need.

  4. Prayed it for you this morning,” Help this God loving family get through today Moment by moment through your abundant gift of GRACE”.

  5. Praying for your family. Thank you for the updates, as they help to know how to pray. May God bless you all and to Him be the glory.

    Kate (friend of Meg)

  6. Thanks Ellie and Bob. The explanations help me (us) know how to specifically pray. I think of you all the time. Constantly. Way out here on the west coast we are praying for Chase, you both and the entire family. WE love you so much. God is in control, and gives grace for the moment. Thank you for reminding us of this truth as you live it. “Seek the LORD and His strength; Seek His face continually.” Psalm 105:4

    His Peace to you all today.

  7. We are praying for Chase and his sweet family. God bless.

  8. Moment by Moment Grace…..love you.

  9. I am a friend of Meg’s. I have been reading and praying for all of you. I cry as I read your blog because I can’t imagine being in your shoes. On the other hand, I want you to know how much your blogs encourage me to trust in our Heavenly Father and continue to fight the good fight. May He encourage and strengthen you minute by minute as He walks through this with you.

  10. Hi Ellie and Bob: mostly I hold my breath when I read your blogs, and am overwhelmed at the strength it must require to deal with Chases’ illness, as well as the decisions you must make daily. SSSOOOOO good Aiden is doing well, oh my gosh!!!! I usually am speechless in responding to your daily stress and find myself praying at the most odd times. you pop up in my mind and then I pray hard, with fervor!!!.
    May God, His Angels and Jesus kiss his pretty lips and infuse their wholeness within him, to bring him back to perfect health balance. that is what I need for you and for him; and I do ask Him for a miracle for this most diserviing precious little boy, Chasie, and for such valient and lovefilled parents.
    my heart is strained at the enormity of it all, God Bless all of you. Love, Maralee Rae

  11. Sweet Ellie –

    I must confess that I am stealing your mantra and applying it to circumstances in my own life. Circumstances much less trying. I hardly feel entitled to it… but still it keeps me going some days. Thanks for sharing your journey with us.

    Moment by moment through GRACE.

  12. pamela Ballou-Nelson

    Dear Ellie, Bob and Family
    Praying, along with all your friends and family, for God peace and wisdom as you walk this journey. What gift would Chase like? Does he have a pillow pet? Would you like a massage Ellie? What can I do for you?

    Pam

  13. Ellie, first, I want to also say, as many have said, you are doing a great job blogging. The reality of things…the details of treatment, the emotions, the honesty, all go Soooo far as we follow the blog to best know how to pray. I don’t know about you but I know for me, when Janae was in the same boat, the blogging actually was a bit of an outlet. It wasn’t a drag. It sounds like it may be the same for you because your writing seems so natural and easy and real. Be encouraged that you are really hitting the spot to help the body of Christ best know how to come around you in prayer:). Second, I remember the, what became very regular, unscheduled visits to the ER during the months and months and months of weekly chemos. As you say, it became the very expected thing…zero white blood cells, high fevers, transfusions, and usually in patient. Also be encouraged that you have chosen a hospital that is sooooo good with their ER treatment of oncology and their attention to infection control. They obviously are not perfect but truly seem to strive for excellence in every department. They have a great track record. And as you say, one ofthe things they do so well (which not all Oncolgy departments do!!!!) is that they hit those rare cancers from the start as hard as they possible can on the front end. I am so relieved to hear you express that you are feeling this as well. For all out there who may wonder, Chase is in the highest of care for what he has been dealt. Lastly, just a word of encouragement, which you probably hear often but I’ll still share as I have walked similar steps ahead of you, sleep as much as you can whenever you can since it won’t often happen in the “traditional” hours now. You’ll need it going into this stage of coming to expect the unexpected. This new stage will be a long one and the lack of traditional sleep time can start to affect every area. Do it for Chasey:). You obviously are his greatest advocates. Love you guys and will continue to pray.

  14. Praying – more and more grace and peace.

  15. Hi: I”m a very good friend of Janet Schnieder , also her neighbor and she shared your website, as my Grandson finished treatment for a long journey of almost 4 years with ALL. He was a fighter and real resillent little guy. Diagnosed at 3 1/2 years and is now 7. Your in my prayers and I so wish the best to Chase as he endures all he is going through, we can’t say WHY HIM, all we can say is GOD IS IN CHARGE AND HAS A PLAN, as I know as he was on my Grandson’s shoulder all the time of his hospital stays, treatments and med’s as we progressed through everything. GOD BLESS YOU AND YOUR FAMILY.

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