With many questions from folks, we realized that it might be helpful to give you all another update and to lay out the plan (HOPEFULLY) for the next month or so.
Heath had his final lumbar puncture on Tuesday afternoon. It was an incredibly long day, but it went pretty well and he didn’t get sick this time! Hopefully, that was the last of any chemo/treatment going into his sweet body. So far no neutropenic fevers that send us back to the Duke ED, but there are a few more days that that could happen. We’re hopeful that we might skip that part this cycle.
With the ostomy, his body is having a tough time keeping magnesium up to safe numbers, so he will have to go into the Valvano Day Hospital every other day for magnesium infusions until he has his reversal surgery later in the month. These labs/infusions usually take a couple of hours, but we decided we would rather go into the VDH instead of keeping his port accessed and doing the infusions at home. This is not fun, but we know it is the best way, so it is just what it has to be…(I feel like we have had to say this A LOT in the last few months).
The PET/CT scans are set for Tuesday, December 14. Hopefully, we’ll get results within 24 hours.
If all looks good (no signs of lymphoma) on the scans, he’ll be cleared for surgery to reverse his ostomy–to put his intestines back together–on Tuesday, December 28. We don’t know a ton of details about recovery, but we’re guessing he’ll be in-patient at least through the first few days of 2022.
Hope. How many times did I just type “hope,” “hopeful,” or “hopefully?” How many times have we prayed to find glimmers of hope? So many.
My Nana loved poetry. She used to do poetry readings for her book club and then even in the retirement community where she lived, right up to a couple of weeks before she died early in 2021 (She died of COVID complications–seriously y’all, please get your vaccines and wear your masks). One of her favorite poets, and mine, is Emily Dickinson. As we have made our way through these difficult months, grasping for hope, I have heard the words of a particular poem in my head, in my soul. Last week, I was walking near the elevators on the 5th floor of Duke, taking a deep breath as I dared to HOPE that Heath’s treatment was coming to an end. And I looked up and saw the words of the poem. Those words had been there THE WHOLE TIME, but my mind was always so busy as I rushed through that space that I hadn’t really read the words.
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
I dare say the hope has been there–found deep in our souls, found in beautiful acts of kindness, of great medical care, in the ways Heath has endured and overcome so many hard things. We’ll continue to hope and take deep breaths as we do a little decorating and maybe even a tiny bit of planning for re-joining the world. This journey is still not close to being over, but we’re getting there.