Saturday, September 11 — Remembering
Heath and I are sitting here in his hospital room watching the coverage of the 20th anniversary of 9/11. I am glad I am sitting a little behind him because I keep feeling the tears on my face as I think back to that day, as I think of the lives lost, the acts of heroism. May we never forget.
I asked him if it was too much right now–if he wanted to change the channel–and he said, “Not right now. I want to see more, but football will be on in a while…” That felt like a pretty age-appropriate response, especially with everything he is going through.
It has been a long week. It will be a long few months.
Heath’s heart catheterization went well on Thursday–all his pressures are really good (and the same as they have been for years) and his rejection level also remains the same at a 1R0 status, which is very good. This good news made it possible for our transplant team to say “go ahead with the treatment that will knock the heck out of this.” (ok, that is my interpretation and those of you who know me, know that I probably am using stronger language in person…)
We had a long meeting to learn of the plan of treatment for the “obliteration” (Heath likes that word for it) of this lymphoma. At this point, I will spare you all the lists of meds and too many details. Heath has decided that he prefers to know basics but really doesn’t want to know lots of details OR all the coming side-effects of all the meds (he knows “enough,” he says).
Basics: He will do the first round–with not quite the whole cocktail–today. He will stay inpatient for a couple of days to monitor his reaction. This cycle will be only about 8 days. The plan is to start the next cycle (the rest of the cycles are 21 days for a total of 13 weeks) on Monday 9/20. The first week of each cycle will probably be inpatient with the other 2 weeks at home, hopefully. The meds are a mix of IV, oral, and intrathecal (lumbar puncture). He is most likely going to be pretty darn sick. INTRATHECAL has now landed on my “medical words that I wish I didn’t need to learn” and it just means spinal injection. It sounds super painful but is done with numbing and doesn’t seem to be awful (I know, easy for me to say). They did the first one yesterday after the port was placed while he was still under anesthesia.
The port placement went well. It was a super long day. What we were reminded of yesterday is that when you are one of the last surgical cases, your time gets bumped later and later. He didn’t get to the PACU (recovery) until after 5:30. We finally got to our room on 5200 at 6:45! He was still groggy and he went back to sleep eventually and then ended up taking meds and eating his Noodles and Co. at 11:30 p.m. Many days are just like that in hospital world. Through the day we saw several staff members who we have known for our almost 13 years here at Duke–one nurse who was with us in the PICU the night Heath was put on ECMO all those years ago now works in the PACU and we’ve continued our relationship with her for all these years. And then we got one of Heath’s favorite oncology nurses for the night. Even in the midst of a long day, I found myself regularly thinking, “there are a lot of good people in this place, in the world.”
And indeed there are good people. so many. Sometimes we forget that with all the hard things in the world; with all the hard things going on in our lives.
The song “The Prayer” from the musical Come From Away has been playing through my head all morning. The song is based on the prayer of Saint Francis. (If you haven’t seen Come From Away, based on true events of 9/11 and following days in Canada, I hear it is on Apple TV. It is something that everyone should experience.)
Make me a channel of your peace.
Where there is hatred let me bring your love.
Where there is injury, your pardon, Lord
And where there’s doubt, true faith in you.
Make me a channel of your peace
Where there’s despair in life, let me bring hope
Where there is darkness, only light
And where there’s sadness, ever joy.
May we never forget–what happened that day 20 years ago, what happens when we let hate and anger take over. May we never forget that there is so much good in the world–in first responders who run into buildings and give their lives to save others and on pediatric oncology units and all the places in between. May we endeavor to be channels of God’s peace, hope, and light. May we be open to the times when we need others to be those channels in our lives.
Praying for you and your whole family and the medical staff that takes care of you.
❤️
My best for Heath for a full recovery. I love the hymn and through all of the choirs, I have been in, there is a beautiful anthem on the hymn. I pray for your strength.
Our choir director is singing “Make Me A Channel of Your Peace.”
God is listening….
Peace and Love to the Tuttles
Thank you for sharing this journey so beautifully. I echo Terry Hammersly’s thoughts. She said it so well. We are seeing your amazing son through your eyes. We pray for healing and comfort and that you will feel the Comforter’s presence surrounding you.
You guys are in our thoughts and prayers daily.
Hoping Heath is feeling ok today and can enjoy NFL kickoff games as a mental escape. Happy he will be able to get the kick-a$$ meds too. That’s a great positive in so many ways — yay for his healthy heart and kicking this thing to the curb!!
How courageous are the Tuttles! Know deep in your hearts that you are not standing at the bedside alone; surrounded by the Divine and a community of saints who love you and lift you up in prayer. “Out, out, damn spot!”
May God’s healing waters flow through Heath’s body and bring healing in every organ and vein….Visualizing a young healthy Heath…..May God give him the strength n faith he needs for this time. And to his mom n dad . brother ,sister and other family members lots of love n hope….
May God’s grace shine upon you all!
Continued love and prayers for you and Chris, and especially Heath. I am overwhelmed with admiration for your strength. I know God is holding all of you close to His heart. Love to the children. 🙏💞
Having a truly loving, close family is healing in itself. And having parents who are so wise, so honest, and so supportive is a great gift. Thank you letting all of us who have never met Heath see him through your eyes: a beautiful, intelligent, strong boy who loves the word “obliterate” — that’s what we want to happen, too. Blessings every day for all of you. Love, Terry & Mike
What a beautiful and moving post, Carrie.
Sending love and prayers.
Here’s to “obliteration”!
So sorry you and your family are going through this. Continuing to pray for all of you. Faith and good wishes are sent with lots of love.
The one thing that got me through my husband’s cancer treatments was to get through each day and not think about what ifs. I tried to find something positive each day. So glad you have a caring team and so much support.
❤️❤️❤️🙏🏻🙏🏻🙏🏻
Touches my heart! God’s blessings on you all! ❤️❤️❤️
Prayers & Hugs!
I have no words. Just a lot of love and hugs. I cannot imagine what you are going through. The way you AND Heath are handling this it is amazing! Jack and I send our love. And indeed you are not going through this alone. You all are a shining example of Gods love.
Blessings
Carol🎶🦋🎶 and Jack
I continue to appreciate your posts. “Come From Away” was awesome and should be seen by all.
Especially at this time. Continuing to keep you in my thoughts. If you need me to channel any “words”
that you might be hesitant to use, let me know.
Praying for obliteration of those cancer cells, and for a healthy portion of God’s grace and comfort with you all.
Amen!
Sending prayers and love and thunderstruck admiration for all that Heath and all of you continue to handle with such kindness and love.
Indeed there are a lot of good people in the world.
Team Swetenburg hoping for minimal side effects with the chemotherapy
Here’s to knocking the heck put of this lymphoma.
And prayers for Heath, the medical teams and your entire family.
Continued prayers and much love♥️
Holding you all in our hearts.
Sending prayers along with admiration and love.
Sending love and support.
Sending much love.
Thank you Chris. Your words help put everything into perspective. It is easy to lose sight of the good when there are so many bad things happening.
Jeff.
I well remember the ECMO baby Heath was on. What a comfort it has to be to have familiar faces around you and Heath during this go-around.
I like to think of them as God’s Angels….
Am trusting and PRAYING everything will work for Heath…
Heath is first on my mind when I wake up EVERY Day….
Love the song from Come From Away…
Sending Greensboro Love…
Bonnie
We will keep praying for “obliteration” too!
As always, prayers and hugs !!