A Parent’s Worst Nightmare

Acute Lymphoblastic Leukemia.

Three words that are now part of our family’s conversations.  My brother Dave and his wife Lyn’s 3 year old son Caden was diagnosed this past weekend with Acute Lymphoblastic Leukemia.  Actually of all the childhood cancers to get, this one is statistically most treatable.  Who wants to be a statistic?

Honestly, at this point, it’s just incredibly overwhelming for Dave & Lyn – blood tests, bone marrow biopsy, spinal tap, chemo – it’s really hard for them (and the rest of us) to wrap their minds around those words in connection with THEIR child.  I can only imagine.

My brother, Dave, was a pharmacy tech in the Navy (a medic) – served on the USS Bataan in both Afghanistan & Iraq.  Witnessed trauma, amputation, even death.  He was a volunteer EMT in their hometown for sometime after he got out of the Navy.  He has a lot of familiarity with medical situations and terms.  One of his best friends from high school who joined the Navy with him died a few years ago from a form of leukemia.  Dave was subsequently a bone marrow donor for someone he didn’t even know.   Their personal familiarity with leukemia is both a blessing & a curse.

Walking into their hospital room yesterday to spend just a few hours with them, my first impression was – it seemed spacious and decent.  Had it’s own bathroom with a full shower – blessing for mom & dad. And then I saw the “Childhood Cancer” book on their couch.  Wow – talk about a ton of bricks!

And then they wheeled Caden back in on the hospital bed following his spinal tap and first round of chemo.  And there was suddenly no room.  And Caden was groggy.  Cranky.  A little puffy.  He’d had a chest port put in for the administration of chemo took some time for him to be able to settle & get comfortable again.  Can anybody blame him?  A nurse would come in to do one thing or another and he would just whine and put his little hand up to try to fend her off or maybe even hide her from his view.  It’s obvious he really wants to be left alone.

Dave & Lyn had several friends come by – and Lyn’s parents came before I left.  My parents are going to visit today since dad will be mobile after having his wrap removed after his knee surgery last week.  They have Caden’s big sisters right now – who haven’t seen him since Friday and only know that Caden’s “blood is sick.”

Caden will be in this hospital through Wednesday, minimum.  He has to get some kind of shot Wednesday morning inpatient – and I guess they go from there after that.  He will have chemo daily/weekly (I think this part is even still not clear to D&L), steroids 2 times every day.  As well as something to help with his nausea, etc.  He will have another bone marrow biopsy & spinal tap next week to compare his counts prior to and since chemo started.

I liked their doctor (Dr. Kitchen) for the fact that she is straight forward but upbeat.  Not chipper in an annoying way; not serious in a morbid way.  She is keeping them in the loop and answering their questions and waits to see if they have more questions.  The nurses are friendly, but it took FOR-E-VER to get Caden some tylenol yesterday.  That could get annoying REAL quick.  (I am not badmouthing nurses – I know too many of them who work way too hard and really care about people – just trying to convey the frustration that was felt in the room yesterday).

Your prayers are really welcome during this time and continuing for the next few years.  I’ve seen people mobilize in a crisis initially, and then life settles in and people forget what’s going on because it becomes part of what is “normal” for someone.  When you pray, please ask that those around Dave & Lyn pay attention and pitch in and give support even when things become routine later.  Long-term caregiving is draining and exhausting and the caregivers aren’t always able to ask for help.  Pray that we will all be able to be familiar with their needs and help before they are at their wits’ end.  Pray for Caden’s strength & recovery and for the doctors wisdom & guidance.  Pray for peace, clarity & comfort for Dave & Lyn, and Caden’s sisters, Charlie & Chloe.  For Lyn’s parents and mine, who are going to be major sources of support.  For those of us who can help in any way possible.

I will post updates here as often as I can.


2 Responses to “A Parent’s Worst Nightmare”

  1. Jill Says:

    OMG!!!! My heart goes out to Caden & your
    family Debbie. Bless his lil’ heart!!!
    He seems like he his a very strong lil’ boy
    and KNOW that God is there for all of you to
    keep each other lifted up in prayer & in
    strength. My Prayers Go Up!!

  2. NanaBaker Says:

    So beautifully written Hon – I love to read what you ‘gather’ and ‘present’ –
    We are thanking God for answers to prayer in all these things, and for what He’s going to do in the days ahead. It’s sooo tough to see such a little guy suffering, but on the flip side, we trust that all the things that are making him sick now, will make him well in the future. I know Dave & Lyn sure appreciated your visit – I do too. Thanks for all you do as family and a friend as well. XO

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