Wednesday, September 22 – Weary Wednesday
Timely updates are tough because things keep changing, hour by hour, sometimes even minute by minute (which is making me chuckle a little because anyone who has spent a lot of time in any hospital knows that it is almost always a “hurry up and wait” kind of place). Nevertheless, I know folks are anxious for an update and not wanting to bug us, so here is my version as of 12 noon on Wednesday.
Monday was a super rough day, but not completely due to response to chemo and next steps, but in anticipation of them. We were all feeling pretty anxious, and it manifested in Heath having some pretty significant pain (also due to mass, of course) and high blood pressure. So it took a while longer to get in a room and to get started with chemo because we needed to rule out other medical issues w/ gut pain. After 7 hours waiting for a kidney and belly ultrasound (long story), they decided to go ahead with first set of chemo meds and get the ultrasound the next morning when Heath would be NPO (for you folks who haven’t had to do much medical treatment, that just means no food or drink) anyway for his lumbar puncture chemo. The great news after a long day was that he tolerated the first chemo meds well through the night and his kidneys seemed to decide to start working they way they needed to.
Yesterday was busy and “hangry” day. Twice having to be transported around the hospital. Ultrasound, back to room to start next set of chemo meds, then to pre-op for lumbar puncture (luckily we learned that they will not all need to be with full anesthesia, just the one yesterday hopefully, which will make that part easier as we go on 🤦♀️). They didn’t start that procedure until almost 3. Again, “hurry up and wait.” He was soooo hungry. As he was in recovery, we learned that the ultrasound had come back with “unremarkable” look at his kidneys (I.e. they looked ok with nothing bad going on). I told Heath that his over-achieving parents would be super proud if all his parts could continue to be “unremarkable” during and after this treatment.
He’s had a lot going into that precious body of his—regular meds, chemo meds, anti-nausea and meds to combat the effects of all those meds—and we are celebrating that he is not as sick as we anticipated right now, but some of the other issues (kidneys, fluid, belly pain) are what we’re focusing on today. Chris and I switched about an hour ago and it sounds like Heath is perking up a bit (now that annoying mom is gone? Hee, hee). they started lasix to remove some fluid and will have another chemo infusion pretty soon. Hopefully the only moving around today will be a walk around the unit and he can settle in to some final chemo and getting all sorts of levels in the right spots for next steps. (And hopefully home in a few days.)
As I make my way to my bed for a little nap (ya’ll, we’re pretty darn exhausted. Weary. Truth.), my eyes just caught this bookmark, sent by some dear friends from First Pres. My comfort scripture—my favorite—many of my friends and parishioners have heard these words tumble from my lips as they go through their own sets of hardship over the years. the waters are feeling pretty darn high right now, I am not going to lie, but we know that we are as ok as we can be and are surrounded by love and excellent medical care.
Isaiah 43
But now thus says the Lord,
he who created you, O Jacob,
he who formed you, O Israel:
Do not fear, for I have redeemed you;
I have called you by name, you are mine.
2 When you pass through the waters, I will be with you;
and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
and the flame shall not consume you.
Oh my gosh, I cannot imagine the exhaustion all of you must have and the bravery of Heath. God be with you all and hold you in the palm of his hand. Steady prayers.
As i read your update i knew before you said it what scripture you were going to say. Our theme this year is good calls we respond based on Isaiah 43. You are not alone. Heath is not alone. Prayers for relief from worry and fear for you all. Sending much love and many hugs! 🙏❤️🤗
Thanks for taking the time to update us. What an exhausting time. That scripture, though! Days before you posted this, I had already broken formation and subbed it for the lectionary text next week – bc it was all too hard and gross for these particular days. It is beloved, and seeing it here tonight was holy. Much love.
Thank you for sharing what this week has been like. Have thought of you all throughout the day every day. So wish we could share in your exhaustion and help the weariness turn into comfort. Please know we would if we could. Love to all.
Psalm 121 has gotten me through a lot of personal challenges. Our love to you all as we continue to hope and pray for the best of outcomes for your precious Heath.
Carol🎶🦋🎶
Just one among many holding your hand from afar
We are all praying for you! 🙏🏻
We feel your weariness in reading this post and our hearts are hurting that there isn’t more we can do. But we pray and ask God to continue with you “through the waters and fire” for we all know whose we are. Prayers.
Praying God’s healing grace on all of you. ❤️
You and Chris are so eloquent with your words. So honest too!! I have learned about chemo and the many kinds used. Such a brave 13 year old to face all of this. Two parents guiding every minute and God holding him in his arms. 🙏🏻🥰
Lifting you up in prayer
Continuing to keep up with your updates and sending so much love your way.
💙
Thank you for sharing, much love to each of you.
So grateful for this sharing of information on Heath’s progress and the great care and love he is receiving from his parents and medical team. Sending healing thoughts, energy, hope and love your way, every minute of every day.
Carrie and Chris, Thanks for allowing all of us who love and care so much for the entire Tutter clan to walk this journey with you all. You are in my mind , my heart, my prayers.
Beautiful scripture and reminder! Yes! And we are always grateful for “unremarkable” and “uneventful.” But you two excel at being remarkable!
Take care of Heath and also of your selves. Sleep when you can. Sending more prayers. Always. ♥️
Thanks for the updates! Sending hugs to your family and prayers as you navigate through this season!
Eagerly await your updates. My prayers continue throughout each day for Heath and all the Tuttle’s.
❤️❤️❤️ Prayers and hugs continue
We are grateful for every word from you letting us stay in the loop. Continued daily (and between) prayers and love to all of you.
❤️❤️❤️
Thinking of you all and sending love and support.
Sending love.
We can only imagine this trying tome for each of you and keep prayers coming morning ,noon ,n nite!!!!
peace and love
May the healing waters wash away the diseased cells….and good health return……
Sending much love…along with constant prayer.
Thankful for your message.
Keeping you in constant prayer and thought…
Do hope you can Lay your head down and Rest dear Carrie….
Hugs and Love
🙏🥰🍀🥰🙏