I always thought I would be a mom. I have a good mom. I grew up in a happy family. I have a brother and sister, who I cherish. When Dennis and I got married, he wanted enough children to field a baseball game. I remember thinking that’s kind of nutty, but I’m game for a few.
Becoming parents didn’t come easy for us. We had to work really hard for Maggie, our oldest, and Embree. Us coming to terms with the fact that we might not become parents… the desire for children only intensified. Then we did have Maggie and Embree, and Beatrice, ten years later, which was a shock. It not coming easy made having children all the sweeter. Being a mom to these girls, even in difficult times, it’s been one of the joys of my life.
Everybody has ups and downs in their life. When we were struggling with infertility, I would say to people “I realize that this is actually a comment on how cushy and easy my life has been, but this is the worst thing that’s ever happened to me.”
A couple of years ago, at my church women’s retreat, someone said that God gets you through tough times. I said, “I believe that, but what does it look like?” I was sincere. Someone answered, “You’ll know it when the time comes.”
It is true. I feel in my own life that God is most often revealed through people and our relationships. That is certainly how I feel God’s presence now and in the last few weeks. I have heard directly from people I haven’t heard from in 25 years. Facebook, Caringbridge, and networking sites make it so easy to reach out.
Embree has been blessed with good health her whole life. When I look back on the month of January I can see that she was not herself for awhile. She would say, “you’re walking too fast. I can’t keep up.” She got these fancy, new clogs for Christmas and I blamed the clogs. On January 19, I took her to the doctor because she had a low grade fever and didn’t feel well. They checked for the usual suspects. She had a loose tooth and was messing with it, and they said even that can cause a low grade fever. She’d probably feel fine in a couple of days. Well, by Thursday, January 26, she wasn’t feeling any better and the low grade fever was coming and going.
I took her older sister to school, came back and received a call saying the doctor could fit me in at 9. Normally, I would have begged for a later time so I could get a shower, but I was anxious and took the appointment. In the examining room, I saw little red dots on Embree’s neck and forehead. It was a different doctor than we had seen the week before. I explained the whole thing about the tooth and the dots. And she looked at them and she pulled on the skin to see if they turned white, so that told her they were tiny, tiny bruises, not a rash.
I could tell by her manner that she was very concerned. She said, “It could be mono. Let’s just do some blood work.” I called Dennis. While we were waiting for the results, Beatrice was getting really antsy and I was pushing her in the stroller up and down the hall. My heart was beating. I could hear in my ears a kind of whooshing. I saw the nurse hand something to the doctor. I saw the doctor go into her office and close the door. I had a bad feeling. When she came out, she had a piece of paper and it said, UNC Cancer Center. She said, “you need to go. Embree’s bloodwork is very abnormal. It could be caused by a virus. I’m very concerned about leukemia. You can use my office to make any calls you need to make.” I needed to make some arrangements for Beatrice. Dennis came straight to Rex Hospital. I handed Beatrice to my friend Ashley and we were at the cancer center before noon.
By the end of that day, they were able to tell us that it was ALL, acute lymphatic leukemia, the one you want to have. It’s very treatable and the prognosis is very good. I look back and think on that as a really positive thing. By the end of that day, we could say, ok, this is not going to be any fun, but we’re going to do it and we have every reason to hope that she’ll be fine. With a lot of cancers, there are so many doctors to see and second opinions to get, but this was pretty cut and dried.
The first couple of days especially, I had a hard time taking in the medical part. It was almost like, ok, get past the explanation, just tell me what we need to do today to get better. It took 48 hours before I said leukemia. It was overwhelming. Our first morning after being admitted, she had surgery to put her port in. They did a bone marrow aspirate. She had a lumbar puncture. That almost seemed surreal. 24 hours before, we had been sitting at our counter, eating breakfast.
I do remember the first day and weekend, the hundreds and hundreds of emails, text messages and calls that were so, so sweet. Embree would sleep and I would just sit in our room on my phone and scroll through and reread emails. It was a real source of comfort to know how many people love her, even those who don’t even know her but they know me or know Dennis. That was so humbling.
Dennis and I had lots of conversations in the hospital. I remember him saying, “when you go through something like this, then life is never the same.” It’s true. It just causes you to take stock of things, maybe jettison things that aren’t as important as you thought, and by the same token, go deeper into some things that are.
Hard moments? I can remember one day in particular. She had been taking methodextrate steroid for four days. Those drugs are very hard on everyone and especially kids. They had told us she could get irritable. It was like she was possessed. At some point, I said, “I wish I could just be sick for you.” That night when we were laying in bed, she said, “if you could be sick for me, I wouldn’t want you to do it.” That was the Embree we knew.
Probably on the third day of the hospital, they gave us a calendar with a schedule of what she takes for every day of that month. I find that I can sort of get my head around 4-week chunks. Before each phase, the doctors tell you what to expect. It is overwhelming. Dennis always says, “we’ll just deal with each day as it comes.”
So far, she’s not felt too terrible. She’s tired. We’re staying ahead of the nausea with anti-nausea medicine. The clinic days are long. But she’s made a few friends. It’s not as horrible as you might think.
One Friday, when we were in for the second time, she had had a bone marrow aspirate and blood draw and was getting ready to be sedated for the lumbar puncture. Our doctor, Dr. Blatt, walked into the room with a big grin and two thumbs up and said, “I just got an email about her MRD number. That’s minimum residual disease number. Very, very good news. I was just so relieved. I didn’t even realize how much stress I was carrying until she said, “great news.” I felt physically weak. I had had a long night the night before. I almost sunk into a chair. We were so relieved and happy and thankful.
What gets me through? Relationships. My friends and family and extended family. That’s basically what gets me through. Everybody copes in their own way. Several people have said, “how is your relationship?” We certainly have our moments. It’s very stressful. But by in large, we are yoked together and single minded in our goals. I see parents on the wards and their situations are not as good as ours. They don’t have the resources financially, educationally, to cope as well as us. I feel like we’re the lucky ones. And I’m grateful. Luck—that’s a big thing.
People say, “You’re so strong. I don’t know how you’re doing this.” I don’t think we are doing something that any parent wouldn’t do. As far as being so honest and open about the experience, I don’t know another way to be. Maybe when we get behind this, maybe we can do something that’s helpful.