This week, Reese was scheduled to go in for her routine labs and check up. This happens every 3 months, and we were planning to move to every 6 months, after June. I called to ask if I could move to a virtual appointment, with labs drawn nearby at a satellite office. None of us have been anywhere high risk since COVID started in March, and I really wasn’t interested in walking into a hospital with her unless there was a good reason. Reese is doing really well and I had no cause for concern.
On June 9th, I took Reese to the outpatient lab in Northbrook. Per our protocol, she was the first appointment at 7:30am. I took her alone, we walked in, got labs, and walked out. They made us put on a surgical mask, which I thought was funny, since we were already wearing N95s. But we added it on top, to appease.
Yesterday, June 10th, I requested Reese’s CBC results. We hadn’t had a virtual appointment yet, but I wanted to see that everything was as it should be on her CBC. I’ve been around long enough to spot an obvious problem pretty quickly. Her nurse sent a few numbers over: ANC .460 and Hgb 9.9.
ANC is absolute neutrophil count… they are white blood cells and your body’s first line of immune defense. A normal ANC is 1.500 – 9.00. “Neutropenia” is something Reese dealt with right after transplant, before her immune system came in. Neutropenia is an ANC <.500. A normal hemoglobin (Hgb) is 11.5- 15.5.
So Reese is neutropenic? Yes. And her hemoglobin is low. This is absolutely terrifying. I had a long phone call that night with our oncologist, and it was very scary. It was agreed upon that this didn’t look like a typical JMML relapse, and it was pretty late in the game for graft failure. Secondary cancer was mentioned, other hemo diseases. Things that I never wanted to talk about, the thing that nightmares are made of. It was determined that Reese should come to Lurie the next day and get a bunch of tests done. Based on the results of these tests, she would possibly have a bone marrow aspiration to check her chimerism and mutations. WHAT. I was told, that because she is neutropenic, I need to bring her to the ER if she gets a fever and she should avoid construction, etc. for mold spores. WHAT.
We have been so blessed to not have relapse be a part of discussions about Reese. We have had our mountains, but this has not been one of them. Thank God. I can’t explain the feeling, when everything melts away in an instant. When you see that your whole world might be destroyed. I know so many of you understand this, I’m sorry, and if you don’t, that’s amazing.
I titled this “a scare” so that you would understand this was just a scare from the beginning. Going into this appointment, I knew what I was praying for. I wanted one line to be affected. Red blood cells or white, not both. There are reasons for low hemoglobin, there are reasons for a severely low ANC… but if you put it together, it becomes much more serious. This is why the team responded the way they did, Reese had two down. But her platelets are steady around 400, this is also a big deal, and very positive.
Around 5pm Reese’s labs resulted. All markers for all different things were NEGATIVE or within NORMAL. We held our breath waiting for her ANC and Hgb. Her CBC came last.
ANC 1.280 (up from .460) and Hgb 10.0 (up from 9.9, so basically the same.)
She is NOT neutropenic!! It is a complete mystery why her ANC was so low on 6/9. The value that sent us all into a state of shock. And why it bumped up that much in two days (“that can’t happen” – our onc.) But we know Reese, and wildly incredible things happen to my little girl. But we do know that her ANC is still low, and we have a theory about why it has been this way the past few months. (Her ANC in April was 780 (very low) and her new value of 1.28 is still low.)
In mid-March, the same week we went into isolation for COVID, my whole family was sick. Chris and I were sick for about two weeks… no fevers, but lethargic and just a general icky feeling. The kids were all “sick” too, with mild coughs, no fevers. At one point, I called the pediatrician to ask what I would do if I wanted to get Reese tested for COVID (and I learned that at that time, they didn’t test kids unless they were so severe that they were being admitted to the PICU.) Our oncologist has a theory that Reese had COVID in March. If not COVID, some virus. That virus caused a spiral effect, wreaking havoc on Reese’s immune system and ANC in April, May, and now June. This can been seen with other viruses, like EBV and CMV. But, we don’t understand COVID yet, which she mentioned a couple times, so we just don’t know what it does.
I never thought I’d be overjoyed to hear that Reese potentially had COVID. The doctors are NOT ordering an antibody test, because they are not reliable enough to be valid. (I thought that was interesting.) So they don’t see a point in bothering. So, for now, this is just a theory. And it doesn’t mean that Reese can’t get COVID again, because no one really knows, so we just praise God that we have a REASON! A reason that isn’t some of the other unthinkable things.
As we wrap up our scare (I pray it’s over) I am even more thankful for my little family and our amazing social-distancing life. I never stop being thankful, I have so many blessings, I know. But this life is good. If I had to be with these three little girls every day forever, I’d be luckier than I ever dreamed.
Please join me in prayer that God continue to protect Reese, and that this scare will end with a viral diagnosis. We are still waiting on labs that take a week to result, so this needs to stick.