Tuesday, January 25 — The rollercoaster continues
For the last few weeks, we have had today circled on our calendar. We were going to head in to Duke, meet with oncology, and have a CT scan. If all seemed well we would transition to what they are calling, ‘follow up care,’ meaning that this leg of the journey might be over. Maybe.
But aren’t there today, because Heath tested positive for COVID on Sunday morning.
We’ve actually been all in separate spaces and masking in our house for a while now. EB had an exposure, then Wilson, then EB tested positive, then Wilson tested negative TWICE before he tested positive. Sweet guy has been sleeping in the den for 7 days. Carrie is in the guest room. The dog is very, very confused. Nothing more than congestion and a slight fever for anyone, thankfully. There is a picture below of all five of us on facetime singing to Heath for his birthday last Tuesday evening. Wilson’s test was Tuesday afternoon, then Carrie and I were both negative on a rapid test, then we retreated to our corners. I did curbside pickup for dinner, and then took wonderful brownies made by Carrie’s mom on napkins to everyone’s room. I stuck a candle in Heath’s, lit it, then ran downstairs and called everyone. It was ridiculous and sad and fun all at the same time.
But we were pretty darn sure we were in the clear. Everyone else felt fine. Heath and Carrie were rapid negative on Thursday, so he was able to do his big heart checkup, which went really well. That was great news. We had scheduled PCR tests for Carrie and Heath and myself for Friday. Early Sunday the results came in – Carrie and I were both negative. Hooray! Maybe we’ll beat this thing! Then another email…Heath was positive. Our hearts sank.
Thankfully, our wonderful health care team kicked into gear. I’ll take Heath Tuesday to an infusion center for COVID patients where he’ll receive a 30-minute infusion of monoclonal antibodies. We’ll have to hang out for another hour, then we can come home. Receiving this treatment usually reserved for immune-compromised or other vulnerable patients is a privilege, that we know. We should say once again how grateful we are for that health care team. And we should also again say that this virus spreads like crazy and you won’t have any idea how, so please be careful, and please act out of care for all of the people around you.
This is also a place to say ‘thank you’ to all of you who have shared so much for our bags for healthcare workers. You all have been amazing. We are making plans to put them together over the next few weeks (once we’re all out of quarantine). If you have given or dropped off supplies, THANK YOU. Every time the dog has barked the past week we’ve heard Wilson call out from the den, “Someone else is leaving something on the porch!” If you have been meaning to but haven’t gotten around to it yet, no problem. Actually, it would help us if you would wait. We have a lot of wonderful supplies and would love to get some bags made, then we’ll let you know if we need more help I really think we can do 150 with all you have given. We will use your generous donations to help get any extra supplies needed for the bags and we are working with some folks on a couple of special projects with the remaining donations! We’re also working on putting together a list of other places you can support with your time or energy or money. We’re learning a lot about the world of pediatric cancer and will share in a few weeks some resources you can focus some of your amazing generosity. We really can’t say thank you enough.
I’ll confess this morning, after not much sleep and even more worry, I was getting down. I walked the dog while Carrie consulted with our Duke folks, then went down to the basement to do some work. I opened up an email to WPCs wonderful staff to let them know of Heath’s positive test, and paused for a moment to take a breath. We’re tired. And each time we think we have a date that will get us to another milestone something happens, and things get pushed back, and that is really disappointing. But then, in the middle of my little pity party, Heath texted me a question about school. Durham Public Schools had an online school day on Monday, with assignments posted and some space for conversation. He was so excited to go back to school. But he was up, checking in on his classes, knocking out a few small assignments. And I was jolted back to reality. If he, in his room with COVID, can get up and do some school and start the day, the least I can do is keep things moving on my end. His attitude continues to amaze me. Actually, the ways all of our kids have handled these few weeks of isolation has been something for which we are so grateful. I think it’s because they know they are cared for and supported, just like we know we are cared for and supported – by God working through you, through so many. It doesn’t mean things don’t still feel pretty heavy sometimes. But we do know there’s plenty of help to share the load.
Love to all of you and prayers for your upcoming milestone coming sooner than later. Thank you for sharing your continued journey with us. Praying your house is Covid free soon.
You all continue to amaze us! You truly do manage to find joy in each hardship you encounter! What fine examples in resilience you are for the rest of us! David and I are are continuing to pray for you and we’re sending lots of love and hugs your way!
I am humbled by all you are going through. Your strength and resilience is so inspiring. You have an amazing family and support system. God is listening. May he continue to bless all of you.
Your resilience continues to amaze me. Will wait to hear what other help you may need with bags
for the hospital angels.
thoughts with you.
You guys are truly amazing. Much love ❤️
Big hugs, love and prayers from all of us. Heath’s attitude (as well as that if you all!) continues to be an inspiration to all of us. We are all dreaming of Montreat summer fun during these cold winter days. Love you all.
Heartfelt love and fervent prayers for all of you wonderful people.
Wow, Heath looks just like you in that picture, Chris! FaceTime rocks! Those are some really adorable faces!! So thankful for and love me some monoclonal antibodies. I’m sure they’re working their little heads off to cure Heath! BTW – you are absolutely allowed to have a moment (or 10) of feeling whatever you feel. There are limits to how much one human being can handle over such a long, frustrating, heart breaking journey. It’s worth a good cry and some deep breaths when you need it. Glad Heath could inspire you to get back up. Keep going, keep trying, and I know you’re praying and so is everyone you’ve ever known (or have never even met!). May God bless you and keep you, Terry
Love and light and prayers abound for each of you, especially Heath. May you each feel God’s presence.
On earth as it is in heaven, the Holy Spirit breaks in when the human spirit needs it most. Part inspiration, determination, preservation and faith…Jesus take the wheel…prayers for a journey with blessings for each and every member of the family, steadfast in God as a source of love and healing
Thank you for bringing us up to date on all. We send our prayers and love to each.
Your Black Mtn. friends
Oh Carrie & Chris – I’m so sorry to hear that you’re having to manage covid and the stress & isolation of that, in addition to everything else. My heart and prayers are with y’all. ❤️
Sending prayers for healing & hugs for all🙏❤️🙏❤️🙏
Chris. Carrie. Wow. I am sorry for this added layer of fear and complication. Ugh! Glad the infusion is available. Praying for and sending love to all of you.
Love all around.
Blessings to all!
Team Tuttle, you are amazing. Just one of the many weeks you have chronicled would have left most of flat on our backs.
Many many thanks to God for the gifts He has given you over this long haul. Many more prayer cheers as time goes on.
God Bless you guys! Sending continued prayers for peace, comfort and joy ❤️
Thank goodness for Ama Ella’s brownies❤️ excited that Heath is looking forward to school! And grateful you are getting thru this to the other side.. Prayers.. Soon!
Love and prayers being sent your way and WILL NOT STOP.
Oh Tuttles, I have “prayed without ceasing” for each of you. It is heartbreaking to hear that COVID has reared its ugly head in your home-AND with Heath. Sigh… I know you are tired, disappointed and scared but I also know that you are indeed surrounded by love. Of course you get that because you have reminded so many of us in our own lows that we too are surrounded by love. Thank you for letting us take this journey with you. Sending all the Tuttles much love and virtual hugs.❤
Oh my goodness- I guess it was bound to happen. I’m so glad everyone is not feeling too badly and Heath is still enthused about school! How wonderful is that! You all must be exhausted and discombobulated. My daughter’s whole family had it the same week and we’re grateful they’re ok. Your thoughts and insights are always a privilege to read, and your faith and love are awesome. Hang in there, weary traveler.
Sending big love!
For the love of all that is good and holy.
I know that a huge number of people are praying for Heath’s health improvements, and for all of you as you continue this journey. And I hope you can fell the love and comfort from everyone.
Blessings,
Betty
May we all have an attitude and outlook like your precious Heath! Get well and be well, in body and spirit! With love and prayers ❤️🙏🏻
Ugggh. Ongoing prayers for healing, patience, and gratitude for the ongoing (often surprising) nudges of encouragement on the journey. Love to you all!
We are so grateful to you for sharing this journey with all its ups and downs. We continue to think about you every day and hold you in our hearts.
May God bless your family. I am still praying for all of you
So much love, care and concern coming to you from Nashville. We are grateful for the team of medical professionals who work with Heath, and praying for HOPE and RELIEF on the horizon for each of you!
You are all amazing and resilient and capable and vulnerable and wonderful human beings. I know this has been a slog and you are making it, one day at a time. Prayers for each and all continue.
It is we who owe a debt of gratitude to your family for so gracefully and generously allowing us to share this journey with you!
But, whew!!! We’re praying that the challenges will soon come to an end.
Love and prayers continue!!
Sending love and tenderness and patience to you all.
So grateful for that infusion, for birthdays and for a family where love abounds!!
Tell Heath that Tim will be refing the LA Championship game this Sunday and will try to get him something from the game if possible
God Speed to all of you
Patty and Tom #97 FJ
poop. I know you all were trying so dang hard to keep the covid away. It’s so stinking contagious. Glad he could get the infusion. Take care the best you can. 🙂
Blessings on Tuttles, one and all, near and far, and blessings on everyone else for that matter! ❤️❤️❤️
Prayers for all
<3
Praying for the treatment to be effective and for all of you to be well soon. Thank goodness the monoclonal antibodies were available!
So very hard. Praying for continued helpful health care, for healing, for joy.
Know you are surrounded and deeply cared about. 💕
Oh, how I wish your family could get some “normal” time! I am glad all are coping and feel supported. Many, many orders go up daily on your behalf. You are loved.
Many, many prayers, that should have said! Darn autofill! But maybe we are getting stronger with God, so maybe they are orders! 😘
Looks like Heath “jump started” you, Chris! We never know where God’s strength will flow from! 🙏♥️
I am so sorry – we had been praying for all in your family to escape this 🦠. Kristin’s family is just finished 2 weeks of whole family having it – her & husband for the 2nd time & several in my myeloma group gave gotten it, had monoclonal therapy & said it made an amazing difference. The resilence of our youth continues to amaze me. Praying for the Tuttles & uneventful days ahead ❤️ C&B
Hugs to all of you!! And continued prayers. Share with the kids that Kona and Batman hope to see their smiling faces out here soon…we all do.
Holding you all mighty close as you get through another hoop…
Big Hugs and Much Love
Love to all from Papa and Mimi!