Friday, September 3 — First course complete!
So…..Carrie and I learned last weekend (when we posted a positive update and then spent the overnight hours in a rough patch), not to do updates too late in the day! As evening comes the anxiety rises a bit.
Thankfully, it has been a good two days. Tuesday was a long clinic day with labs, and some concern about dehydration – so we plugged up IV fluids for a bit. He was sick overnight Tuesday night/Wednesday morning, so we visited our clinic friends on Wednesday as well, though only for a few hours. The kind woman on Thursday who did the entrance covid screening looked at Heath and said, “I did this for you yesterday, didn’t I?”
Thursday’s infusion was as smooth as those things could be. We had a wonderful hour with a dear friend who works for the Hospital School (yes, that is a thing), and who is working with Heath’s Lakewood teachers to make a plan for his education this fall. They started working on a book to read and a project to be working on. It was exciting to see some of this beginning, but it came to an abrupt conclusion when they started his pre-infusion meds, especially the Benadryl. Heath slept through the first two hours of his infusion – which, like last time, took 3.5 hours. He didn’t feel too nauseous and even had a snack near the end. It was a long day, but the beautiful weather meant he could come and lay down on the porch, or inside. He ate a normal dinner as the rest of us went back and forth from a Jordan tennis match for Ella Brooks, and worked to stay hydrated. Keeping him eating and drinking with the illness and accompanying weight loss is a constant challenge, especially when you get sick pretty regularly. But we are getting creative with protein drinks, and Carrie even found some chocolate chip cookies with protein at Target (everything is at Target, right?!), which are a hit. You can imagine it, can’t you? “Dad, I’m having another protein cookie! Look, it’s good for me!”
Thursday was a good night of sleep for all, and has been a slower day for Heath to rest, as Wilson and Ella Brooks went to school. As I rush out to battle the Jordan pickup car line for the first time (Yikes!), I wanted to share one more thing we’ve been thinking about a lot. Most of us are trained, as we grow and learn, to try and think about the big picture. Where are things moving? How can we plan accordingly? In organizations, we ask questions about long-term vision – who are we called to be? Then we can align priorities and work with the vision. We try to organize teams and think sequentially: THIS will happen, then THIS, then THIS. But we have, thus far, found that kind of thinking profoundly frustrating. This disease is something you can’t plan for or work around. Our significant problem-solving skills are inadequate. Carrie and I work hard to function at a high level and keep the trains moving and knock things off of the list. None of these skills can help us now. Each day brings its own set of challenges that are very difficult to plan for. And if we do plan, we are only frustrated. We’ve had to work to bring our vision down to ground level. What will we do today? How does he feel this morning? Certainly, as this goes on, we learn the rhythms of the clinic better and memorize the names of the medications. That is already helping us. But trying to look beyond that is a recipe for disaster because you’re always measuring where you are and how anyone is doing against your expectations, which is a trap. So, we’ll be grateful for a beautiful afternoon and a protein cookie. We’ll be grateful for the friends who will bring dinner this evening. We’ll be grateful for the neighborhood happy hour that happens every Friday at 5 right in front of our house, instituted in the pandemic. And maybe we’ll all walk the dog together in the cool of the evening. And for today, we pray, that will be more than enough. We are so grateful for all of you.
There is great wisdom found within your words. I’m holding your entire family, especially Heath, in my heart as y’all journey through chemo. As someone who just spent summer in that hell, sometimes a patient needs supportive fluids everyday. It sure does stink to spend that much time in the infusion room, but that was something that really helped me. I’m grateful for the protein cookies y’all found, too. Little tricks like that will keep showing up along the way. For me it was chocolate protein shakes, ice cream, and supportive fluids, including magnesium and potassium sometimes.
Thank you for updating us when you can! I struggle daily with giving up my own control of the day and giving control to God on the simplest days. I can’t imagine the new level of giving up planning/control that your sweet family is having to adjust to. Prayers for strength and peace in letting go and hugs to you all from the Pattersons. ❤️
Sending prayers for strength, comfort & Peace.
Yes, eat the protein cookie, enjoy the sunshine and find the joy of every moment. Your family is a beautiful witness of this and has been even before this trial. Praying for you all, esp Heath. ❤️
I am so grateful to be a part of your journey (though I wish fervently that Heath and all of you did not have this journey), to better understand your efforts to navigate with him and each other through terribly difficult times with love and the presence of God and all of his helpers. Your insight amid struggles and your acceptance of what is in the moment gives new perspective to my daily life. I am keeping all of you in prayer with love and am thankful you can share what is so personal with such meaningful words.
Chris and Carrie,
Moffett and I continue to carry you in our hearts. Think of you and pray for you. Your entry today is so spot-on. Sometimes life is not sequential. It is take it as it comes. Though we do not see you (which is probably what you do not need right now), we hold you near to us. Enjoyed those memorable garage visits during 2020
Ted and Moffett
Prayers and hugs to all! ❤️🙏❤️🙏❤️
Prayers and hugs for all of you! ❤️🙏❤️🙏❤️🙏
❤️
You and Carrie are both so intuitive. What you describe is really just living in the present — not getting ahead of yourselves with expectations, not living in the past when things were easier, but seeing some beauty in the difficult things happening right now and allowing yourselves to ride the waves each day, doing the very best you can for your children and yourselves, moment by moment, trusting that God is right there with you cheering you on. And everyone you know is rooting for you, too. Love knows no bounds and you have plenty of love!
And I am very grateful for your family allowing us all to travel with you and witness your experiences and feelings. Sometimes life is more difficult than we could ever imagine but we do the best we can and that is enough for today. We remember we are beloved children of God and tomorrow we will take care of tomorrow. ❤️
We are praying and hope to see ALL of you on that family walk soon!
I really appreciate these updates that you put so much thought into. You may not realize but it also helps others
on how to handle situations. We all have “things” and it is good to get a different perspective . Thank you for sharing.
I am so thankful for this website. I am praying for each you of every day! I’m SO thankful for the wisdom and guidance of your med group; and especially for the fortitude of Heath and you parents and EB and Wilson; and for your community who can bring meals! I LOVE YOU EACH AND ALL!
Thanks for these updates- sending lots of love to all of you!
Michael and Julie
Sending you hugs, love and prayers!
Sending prayers for renewed strength with each new day 🙏 🙏
Thank you Chris for your update. Your writing is wonderful even as the details described are ever changing and frustrating. Glad happy hour is still a support for you, as it is for us, even with our minor daily challenges.
🙏❤️🙏❤️🙏❤️🙏
Beautifully said. We are with you in spirit, sending strength and love.
Thank you for sharing your reality—in such a beautiful way. Praying and sending love!
A message for us all, Chris. Such courage and faith, we continue to pray for all of you to have courage and faith…enough…to sustain you on this journey.
Johnsey and I have you in our thoughts and prayers daily! Thanks for the update!
You guys are amazing and so strong. Constant thoughts and prayers coming from us with lots of love
Sending hugs and patience to live in the moment which really so few of us know how to do. Peace, good sleep, protein cookies and a fun tennis season for EB. Love to all
Praying for you all EVERY day.
The Tuttle Family is an inspiration! Paul and I are praying for you!!
Can’t help but think of you All wishing there were more I could do…
Sending so many Prayers and Hugs
and Lots of Love
Profound and so helpful Chris. Thanks for sharing this learning that is getting you and Carrie and Heath and all the Tuttles through today. And that is enough for today. Prayers, especially for Health, and also for all of you will continue until you tell me it is ok to stop. PEACE
Continuing to send prayers and love to you all and so very thankful for your protein cookies and 5pm Friday Happy Hour! 🙏💜🙏
Sending love and saying prayers and wishing I could carry some of this weight for you, but I know that’s impossible. Hugs to that brave son you have, and everyone who loves him.