Wednesday, September 8 — A busy week and next steps
On Tuesday we had walked from the PET scan in the Duke Cancer Center back to the 4th floor of the CHC (Children’s Health Center) with the PET IV still in, hoping that they could use his IV to draw labs. As we were telling the story of our “journey” to the nurse drawing labs (the IV worked!), I said off-hand, “Heath has been such a good sport in the midst of all of this…” He turned and looked at me, with that Heath half-smirk, and said, “Do I really have any other option?”
And there he is. His whole life with so many medical challenges.
That is what finally brought me to tears last night. We would switch places with him in a minute, but we can’t. All we can do is love him and care for him. Any of you who have cared for a loved one who is suffering knows this feeling deep in your soul.
The PET scan results were not what we had been hoping for. Not enough progress had been made. So, it is now on to the next steps. The oncology team, in conjunction with cardiology and nephrology (those darn creatinine numbers…grrrr…) are in the process of making decisions about the cocktail of drugs, but we know we’ve got to hit this with the harder stuff. They had been hoping to get the general surgery team to put in a port during his heart catheterization tomorrow, but alas, we just found out that it is too tricky to navigate different procedures in different spaces (cath lab instead of OR.) So, they’ll put a port in on Friday. And then will keep him inpatient for several days with the intention to begin the next round of chemo with the new drugs on Saturday. Apparently, there is much more monitoring that needs to take place with any of the options. That is all we know right now. We should have a better understanding tomorrow.
Because he had been feeling pretty good, I think we all thought we’d get the news that we wanted (much more progress on that mass; that he could keep on with the least harsh treatment.) But alas, we always knew this next way was more probable. But we felt the sting of disappointment last night.
Again, the roller coaster keeps going.
We cling to glimpses of “normal.” When the team told us that they thought we had a couple of weeks of “less sick/less immune-suppressed,” Pete and Melinda (my brother and sister-in-law) and the kids came to visit from Virginia. They stayed at Mom and Strow’s outside Chapel Hill and all who weren’t our immediate 5 masked inside (that is what Hemonc has asked us to do for now), of course. But we had the gift of some hangout time with the cousins. We knew it wasn’t totally “normal,” but listening to the banter, the laughter, the fantasy football drafting throughout the weekend, well, that was spirit-lifting and filling. It is a reminder of why you keep fighting when you feel really crummy.
So now we keep going; he keeps going, a better sport than any of us adults can imagine being, frankly. We know, Heath knows, that we don’t do this alone. We are grateful for the glimpses of “normal” and the glimpses of grace along the way, and we most certainly feel your love and prayers.
We pray for all your family every day
Jack and Nancy Beaver
Good to see you enjoying a bit of fun during this stressful time. Heath is quite a courageous young man. I’m praying daily for him and all of the Tuttle family.
FudffMargaret Beatty
Prayers for Heath and all the Tuttles. Love from West Virginia! Jane And Rocky
Carrie, You and your whole family are such an inspiration to me! In the midst of all the concern and not-so-good news, you are having fun. Heath is a courageous (and way older than his age) young man. Many prayers are going up from Paul and I.
Ellen
So sorry about the disappointing results, but very glad to see smiles and family time. The Tuttles are amazing and we are keeping you very close in thought and prayer.
Dear Tuttles — we continue to keep y’all in our prayers, and we think of you often. Let’s hope these next few days go smoothly and with minimal side effects. Sending lots of love from Chapel Hill!!
Love this family! Thank you for the update❤️
Thinking of you guys and so glad to see that you all had some cousin time! Fantasy football is a thing that my kids do with their cousins, too, and the traditions are fierce! I know what a sports-kid Heath is. Hope he got all the good picks. Heath’s absence is acutely felt here, and we miss him so much. We are hoping and praying for the best as you move through the next moments..
Thinking of all of you. Praying that your faith will give all of you strength. ❤️
Wonderful family pictures. Thanks for sending with updates.
What a nice time for the cousins to have fun together! Just keep going, just keep trying — you’re doing your very best. So many prayers are offered for Heath and for all of you! Love, Terry
Sending you hugs. Would it help Heath to journal when he wants to write down his thoughts, feelings? Love to you all, Lesley
I was so glad that Pete and Melinda and kids could make the trip down to spend time with all of you. So very sorry the results weren’t what we all wanted them to be. Heath and all of you are in my thoughts and prayers every day. Sending lots of love and hugs to each of you.
All my love and prayers. Know that God is our comforter during uncertainty and will be with you as you and Carrie comfort and care for your precious son.
Know our love and prayers go with you into each tough and joyful moment.
What a beautiful family of faith and commitment to each other and to the one who holds us all.
We continue to pray for Heath and know it is hard to not get the results you were expecting. Hopefully the next regimen of cocktails will knock this thing out! So glad you could gather with family. Nothing like laughter and feeling the love of others to help get a little “normalcy” back. Sending you all Faith, Hope and Love.
I wish I could be there to give you all a huge and loving hug! Instead, a virtual hug and prayers will continue from Virginia! Love you all! 🙏🙏🙏 ❤️❤️❤️❤️
Prayers continue and yes, DARN, FIDDLESTICKS and all those words for Heath having to go thru harsher treatments!! So grateful to see pictures of family support and tell Heath every guy, and some gals, I know were fantasy football drafting this weekend. May his team WIN IT ALL!!
I’m sorry you didn’t get the news you were hoping for. Holding you all in my heart. Thank you for sharing your journey. xoxo
You are all in our constant thoughts.
So great to see Heath’s smiling face. Please know that your Lakewood family is sending lots of positive energy, prayers, and love.
A mighty cloud of prayer warriors are lifting prayers for Heath and you all. God’s love is everlasting and God mercies never cease
Giving thanks for the time with cousins, your medical teams, the resilience and candor of Heath and your entire family. Ongoing prayers for each step in this journey..
What great pictures…especially that smiling Heath! I am so grateful you are finding these moments in the midst of this tough time…
Bless you all…I am sorry to hear that a stronger round of chemo is needed to get the job done. We pray for the doctor’s wisdom to find the right “cocktail” and for Heath to tolerate the treatments without too much discomfort. Through the knowledge of God’s everlasting love and the prayers of your community of friends, I pray your sweet family may be uplifted and able to endure and support each other each day.
Sending big hugs and more love….
Praying….
Dang. Watching the ones you love go through any pain is excruciating. I’m so sorry that Heath’s journey is getting more complicated, but I can’t imagine a young man having a more loving and capable family, more presence or more support than he does through this. You are doing everything you can possibly do, and he sees that, and we see that. Many many prayers for the “right cocktail” and a full recovery. Love y’all so much.
Fiddlesticks! What a disappointment. So grateful for glimpses of normalcy, and for the spirit of that incredible young man! Love and prayers!
You are doing such hard things. I’m sorry and I’m wishing you all so much fortitude and mercy.
Your Heath – and each of you including your broader family – are uppermost in my heart when offering prayers. I anxiously await updates, whether joy filled or challenging and am grateful that you know THE ONE who travels with you and loves you so much it’s as if there were no others to love.
Praying 🙏
I am praying WITHOUT CEASING for Heath, your whole family, his medical team. God will not leave you. May God’s grace carry you.
Thank you for these updates.
❤️
Thoughts of hope, love, healing, strength and the return to childhood normalcy. I think of you every day.
Love and prayers from Papa.