Since I last wrote about Chase (a veritable age ago), he has been discharged from his sick visit, readmitted for his inpatient chemo, and re-discharged post-chemo again.
The five days in between our hospital stays were packed and precious with family times, in which we saw the truth of doctors words – “Just wait until you get him home.” Chase became a different child in those five days! His color improved, he started talking and interacting more, and even ate food! (Note: this is a big victory for an AT/RT patient as their protocol is so intense that many children stop eating altogether. Chase still needs IV nutrition on a daily basis, but just getting him to the table is a big deal.) The doctors also said that most parents mark the time by this – “When your child starts doing really well, that means it’s time for more chemo.” Check. Time for the big bags, long infusions, and constant monitoring that goes with his inpatient chemo stays.
It’s amazing and a little sick how quickly we adjusted to this “normal”. In fact, we are already forming a routine. This is a blessing, but I truly never thought there would be a day when medical staff hourly monitoring my child’s vitals around the clock would be expected. (Have I mentioned recently how incredible the medical staff is? I should. They are.)
At this moment, we are on the other side … Heading for the “nadir,” the low point. (Real talk: I had go look up “nadir” when I first heard it. In a word, it’s the opposite of “zenith”…ie: when Chase is going to feel absolutely awful). His color is not as good, he’s more tired and irritable, and he regularly complains that his “tummy hurts”. We can tell that his counts are dropping: he’s already clocked in with a couple low grade fevers and we know its only a matter of days before the fevers truly set in and we will be inpatient again.
Chase’s chemo day was switched to Mondays and so we will go back tomorrow for what should be an outpatient clinic day. …but we’ll pack our bags anyway, just in case.
Becoming accustomed to living a life that could be dropped, switched, and hospitalized at any moment is a challenge. It’s hard not to be consumed with watching Chase for changes and stalking him with a thermometer in hand (it’s a funny picture, but I’m often tempted…), yet it’s just another facet of the “moment by moment” mindset we keep ever in front of us.
And so we continue on … Making memories, finding joy, and being ever ready to go.
Ellie and Bob, I am at such a loss… I want to encourage you, say meaningful things to you, be a blessing in some small way… but it is you who have so deeply touched my life by your faith as your family shows such tremendous faith in the midst of such deep waters. I just want you to know that I pray for you almost every day as I walk my dogs. If there is ever any specific thing I can pray for, please, please let me know.
Laura V.
Hi there –
I’m a friend of Heather Johnson. I know you don’t know me, but Chase and your family are in my prayers nightly. I don’t have cancer, but I had a surgery involving my brain a couple months ago and know first hand how hard that alone is – but having all the other medications, etc… he’s a tough little guy. Has Chase gotten any pillowcases from his hospital stays? I’m a coordinator for a group called ConKerr Cancer who deliver handmade, cheery pillowcases to hospitals specifically for kids who are dealing with stuff that’s not so fun and have to stay for a while. If he’s not, I’d like to know, so I can get your local coordinator out there. Stay strong and keep faith. Know that you’re being prayed for.
Much love –
Nikki
You actually do not know me and i have followed your story not precisely only from your blog but also from my good friend “Rebecca Gibson” she told me he was diagnosed with a brain Tumor, I keep you in my prayers and I know the Lord will surely have his way. i also pray that your faith be not shaken by the circumstances you find yourself and the lord keep you this courageous, Amen
Ellie and Bob, I would echo Laura’s words above. There are just no words adequate to say. So, I entrust you and your family to Jesus, praying He will strengthen and sustain you, give you what you need for each moment, and enable you to cling to Him and each other. May His steadfast love hold you during this time.
Love,
Heidi Daniels (Mitchell)