Tuesday, February 2 — COVID and isolation and school and remembering Nana

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I saw a meme on Facebook the other day that said something like, “What a long year January has been.” To that I say, “TRUTH.”

Actually, at this point, I am feeling more like, “What a long decade the last year has been…”

First, Heath is better. Those monoclonal antibodies and vaccines worked well. In fact, Heath Tuttle went to SCHOOL on Friday! I am not even sure I have words for his resilience. Or for the joy that we feel in being able to take “back to school” pictures and see his energy level rising as he gets up to go to school or youth group. We still are waiting to be able to do those next scans, hopefully in the next few weeks. He still has a long way to go, BUT, oh my goodness, what a long way he has come.

I am sitting in the guest room bed, where I have been sleeping for the past 3 weeks. It is hilariously in the middle of the room with almost all of the furniture gone–you see, we were in the process of preparing to have floors installed (they had been on backorder since before Heath was diagnosed!) when Wilson tested positive out of nowhere. The paint supplies are still in the middle of the den, where he quarantined for a week. And then Heath got sick, and then Chris.

Chris tested positive on Thursday about the time the rest of the kids came out of quarantine. He felt pretty crummy for a few days, but he has been getting better and is out of his quarantine room with a mask. Multiple times he has said that he can’t imagine what it would have been like if he hadn’t been vaxxed and boosted.

I am in shock that my most recent PCR test came back negative last night. Damn, COVID makes no sense.

(We had to hold off a bit on the medical thank you projects as everyone recovered. Back on it this week! 😁 )

Chris just snapped this while I was writing.

There are a LOT of “feels” in this house right now.  We are really weary.  We are also incredibly grateful that all are on the mend. We are trying to make our way through this tough time with some of our own resilience, grace, humor, faith, and love.  I know you all are each trying to make it through your own set of “stuff” as well.

We are keenly aware that there is so much grief around us–grief for what we have lost in these COVID years, grief for those who we have lost.

It was a year ago today that we lost my beloved Nana to COVID.

We still haven’t even been able to get together to celebrate her life (Arlington is a little tricky right now with the loss of so many of that greatest generation).  But I am constantly reminded that we celebrate her life every day in the ways that we live out the things we learned from her–she wasn’t always easy, but she loved us deeply and all those “Nana-isms” certainly also remain deep within us.  Throughout the last 6 months, I thought about how much of Heath’s treatment and so many things going on in the world would have broken her heart.  On Friday, as he rolled his eyes and posed on the front porch to go back to school, I thought about how she would have been overjoyed.

So, tonight we will raise a beautiful hand-blown ginormous wine glass (that was Nana’s fav) with white wine and some ice and fruit, sit on her couch and turn on the fire (it was her idea to put in a gas fireplace–she talked about it every time she walked in our den), and we’ll toast to Nana’s long, full life and we’ll hope for a year that doesn’t feel quite like a decade.

I invite you to read about Nana.

Washington Post article about Nana and Nana’s obituary.

Tuesday, January 25 — The rollercoaster continues

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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.

Monday, January 17 — Happy birthday, Heath!

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14!!

Heath turns 14-years-old tomorrow, January 18!! How is that possible? I read something about the fact that he would be eligible for driver’s ed this summer. Seriously?

I think about how many times we have had to say that birthdate over the years for all of his medical stuff, especially in the last 6 months. Those of you who have had chronic medical stuff and lots of appointments, hospitalizations, pharmacy pick-ups, will know exactly what I mean. Sometimes you say that particular birthdate so much that it feels weird to say your own or your other family members’ birthdates and question whether or not you are correct.

We had all hoped that his birthday would be a point to mark in being done with treatment, able to do something super celebratory. And while it is true that he is recovering WELL, albeit slowly, and gaining strength and energy every day, this darn COVID mess and winter weather have hampered our celebration ideas.

SO, I think we’ve all decided that we’ll mark the day with some fun take-out and maybe a little golf cart ride at our friends’ house, but we’ll really figure out how to celebrate it in a few weeks. January birthdays are always a little tricky that way, made trickier in this particular year.

Goodness knows we have plenty to celebrate about this fella and his 14th birthday!!

In an unfortunate turn of events, darn old Omicron has paid our house a visit. Ella Brooks learned on Tuesday that she had been directly exposed on Monday afternoon. She immediately entered her room to isolate, just in case. She didn’t start to show any symptoms until Friday morning and tested positive later that day. (*This is a quick PSA to tell you that an immediate rapid test after exposure is NOT necessarily accurate.) She has been amazing–and with symptoms waning, she is due to be “released from captivity” on Wednesday with more days of masking when around people. Because she isolated so quickly, it appears so far that the rest of us are ok. Her room is cleaner and better organized than ever, and I think she is almost through ALL the seasons of NCIS. We cope how we cope.

While EB and Heath enjoyed the winter weather from their windows, Wilson and Rosie got to do a little snow/ice/sleet time. That meant that Chris and I also got a little time outside, which was mostly lovely, until it wasn’t. Winter in the south–we lost power for only about 2 minutes and even made some fun attempts at some “sledding” (you can ask Wilson about the video) while laughing a bit at the 24×7 frantic news coverage.

Chris, Heath, and I spent some time this morning organizing your incredibly generous donations for our “Medical Staff Appreciation” project.  We are overwhelmed, in the best way, folks.  From all over we have received treats and Starbucks cards and donations.  And there is more coming, we know.  Our new goal–150 bags!!  And some other much-needed donations to a few units. We will really be able to reach SO MANY staff members.  What an incredible gift.  As we opened and organized, we said through tears, “Wow, people are good.”  We must remember that as these days lead us to think the opposite.  There really is so much GOOD.

So, happy birthday to Heath Tuttle tomorrow. 
And happy day to all you good people.
Thank you for continuing to help and care for us and for the world.

Saturday, January 8 – Recovery and giving back

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Heath continues to recover well–the effects of surgery and chemo are no small mountains to climb, but he is making great strides.  Surgery follow-up last week was great and we have basically been given the “we don’t need to see you unless something isn’t right” from that specialty.  We are dealing with getting immuno-suppressants and magnesium levels in the right place.  We have a cardiology quarterly check and the oncology next round of scans in a couple of weeks.  AND, today Heath got his COVID booster after being cleared by docs!!!  It was a special treat to run into a few friends from church, perhaps the first folks outside hospital and family that Heath has seen in person in a long time.

In the rising COVID numbers, I would like to take a moment to remind you all that getting COVID vaccines and boosters are not only for personal safety but for the safety of the larger population–folks like Heath who are immune-compromised and others with pre-existing conditions may not fare as well as healthier folks, even when they have had their shots.  And hey, if he can get a booster after all that he’s been through, use that as your inspiration!

We’re spending much of our time thinking about making the transition back to school and work, strengthening, and exercising.  More than once we’ve looked at each other and said, “I don’t know what to do with myself…”  It is a strange feeling to start to let your guard down when you have been living in “possible crisis mode” for months and months with no break.  I suspect many of you know this feeling from past experience.  Last Sunday Chris and I were both back in the pulpit–also a strange reality of “normal” (perhaps that is not the best way to describe preaching the word of God, but we are both pretty strange…)

SO, we’re finding ourselves turning to wanting to give back.  We promise we’re not going to go overboard right now (there is plenty of time for that as we move on), but we wanted to do a few things and to offer a few ways that you could help us:

1.  DONATE BLOOD–Chris and I are setting up appointments in the next week or so.  It is SO needed EVERYWHERE.  Heath ended up only having a few transfusions, but we promised ourselves that we would start back to regular donation after treatment.

2. HONOR MEDICAL PROFESSIONALS--wherever you live, find a way to thank those who serve as medical and emergency medical professionals.  They are EXHAUSTED and give so much of themselves to their work.  This article in The Atlantic explains why the Omicron wave is taking an even harder toll on healthcare workers than previous waves. From the article, “It [Omicron] might be less of a threat to individual people, but it’s disastrous for the health-care system that those individuals will ultimately need.” (read here)

We are working with some friends to provide a meal to some of those folks who specifically cared for Heath (THANKS and more on this soon) and we have a dream to make AT LEAST 50 “THANK YOU” BAGS for the staff of inpatient and outpatient Peds Oncology, Surgery and Cardiology at Duke.

Here is how you can help. 

We are prepared to do this ourselves, but would welcome your contributions by January 21st.

–50+ $10-15 Starbucks gift cards
–individually-wrapped nice chocolates or other candies
–tic-tacs or gum
–nice small lotions
–chapstick

*You can contact carolinetuttle@gmail.com if you have questions or are welcome to drop off something at our house (or send or contribute a little $).  If you wish to donate, please have anything to us by January 21st when we begin assembling thank you bags.

We did something like this quite a few years ago with our family at Thanksgiving and it meant so much to the medical staff.

This is how we’re beginning to give back to our exhausted medical community. We’d love for you to share your ideas in the comments for other ways to say thank you and support healthcare workers. Your suggestions might resonate with other readers and together our small contributions can create a large wave of gratitude.

Saturday, January 1 – A good start to 2022

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So…I pray your 2022 is beginning well.

Ours is!

After a flurry of activity, we brought Heath home around 1pm today.

The week certainly had its ups and downs. WE felt great after the surgery, but Heath still has a lot of work to do post significant abdominal surgery. Everything is put back together, and the port is removed, but we had to manage a tough pain transition as well as, ahem…get those intestines functioning in a somewhat normal manner:) We juggled all of it with the help of wonderful family support. We can’t do any of this without them.

In the hospital, it was once again the gift of wonderful staff continuity that carried us. We made some new friends, but two of our very favorite nurses were working this week. One helped Heath and I navigate the pain and make a plan, and the other took amazing care of us the past two days, helping lock down all of the details that allowed us to leave comfortably. We took some walks and found out the unit has a nice view of Duke Chapel.

Two quick things.

  1. We are home, and so very excited, but know we have a lot ahead of us. Time and healing and adding weight and gaining strength. Follow up with both surgery and nephrology on Monday. Another appointment Weds. A planning meeting about a transition back to school plan in a few weeks. We already have more followup with cardiology planned, and will be working with oncology to put in place another scan that will hopefully confirm that we’re on solid ground to move forward. It is a lot. We are breathing, and so grateful, but are already making the turn to a new set of plans.
  2. Our healthcare workers are amazing. We have been touched by the skill and compassion of so many saints at Duke, from surgeons and department heads to an especially awesome woman who came to get our food orders this week. But they are all exhausted. A few hadn’t left the hospital for days. Our nurse in the recovery room on Tuesday told us more than 100 nurses were out because of having covid or being directly exposed, and every time the phone rang it was someone else. These people are sacrificing so much as they continue to care for all, and every unit is short-staffed. The pressure is immense. PLEASE do what you can to make their job easier, not harder.

We’re working on some ideas for some things we can do for these saints and will be back in touch this week. We’ll need your help.

Blessings to you all as 2022 begins. May it be filled with good health, special time with people you love, new things to learn and experience, and perhaps a newfound sense of equity and justice in the land.