Yes, you read that right. As bad as I hate to admit it, I was angry at God.
Looking back on this time in my life, I think I may have had some depression. But honestly, I was way too busy worried about everyone else to even think about my own feelings.
Let me set the scene for you.
I was pregnant with our second baby. We’d just moved out of our rental house and into a home we purchased. Exciting times, right? Wrong.
What many people didn’t know until later was that we were fighting another battle.
Earlier that year (March 27, 2016) I took Allie Beth, our oldest daughter, to our pediatrician for a small place on her right hip. At the time she’d just turned a year old. Within several visits, she was treated for yeast, eczema, and also a birthmark. After no improvements and the place beginning to change, we were finally referred to a pediatric dermatologist through UNC.
I cried.
But little did I know that this was just the beginning of a huge test of my faith.
By now it was summer and we were making monthly visits to the dermatologist with no improvement. In fact, it was quite the opposite.
She was being treated for Lichen Sclerosis. We tried several creams until it was finally a huge, ugly spot that had opened up to the outside.
Allie Beth began to hold her pee. We were already using cloth diapers, wondering if she was having a reaction to something in disposables. She would go for up to 24 hours without wetting the diaper. So we were sent to the hospital by the dermatologist for a stay.
Now, the first weekend in December and we were cooped up in a hospital with a rowdy toddler introducing ourselves to doctor after doctor. We didn’t know at the time that these doctors would later become like family to us and we’d be spending a ton of time together.
There wasn’t much to be done over the weekend, but first thing Monday morning she would undergo an MRI and a biopsy. The plastic surgeon doing the biopsy later became one of the most influential doctors in Allie’s treatment.
The MRI and biopsy went great. I went back to see her just as she was waking up. We went back up to her room where she used the bathroom and ate (she had to do these two things before being discharged). Not long after, we were able to go home.
A few days later, her dermatologist called. He told me that the biopsy showed aspergillus mold. The phone call was short and sweet, leaving me with more questions than answers.
I turned to Google. Big no, no, y’all! First thing I found was aspergillosis. I remember holding my phone in my hand and reading that there was a 90% fatality rate.
Later, they called again. Still with few answers, they let us know that a prescription had been called in for an antifungal and an appointment made with infectious disease.
I went to get her medicine from the pharmacy and was told it was going to cost $1100 for a 14 day supply. Now keep in mind, we have just purchased a new home, are pregnant with a new baby, and Hunter is spending a lot of time at doctor’s appointments with me, instead of at work. Now, we’re hit with what would be an extra $2200 a month.
I left and called Hunter.
We made arrangements to pick up the medicine. Her health was more important than any material things and we would do whatever it took to make sure she had it.
What the pharmacist failed to tell us was that they didn’t have the medicine. And neither did any other pharmacy within a 50 mile radius. Trust me, we called everywhere.
It was later Saturday evening and we finally found the medicine at the Children’s hospital pharmacy an hour and a half away. The catch, she had to be a patient to get it there.
We called the dermatologist on call, who, after hearing she was still in pain and not using the bathroom, decided to have us come back in.
The second weekend in December, everyone’s getting ready for Christmas, and we are headed back to the hospital with our toddler.
During this time, I was so upset that I really dreaded Christmas. One of the happiest times of the year- Jesus’ birth- yet I wanted no part of it. I just wanted to pack up all of our decorations and skip over it this year. I had hardly any presents bought, there was about two weeks until Christmas, and our life was less “Christmas-y” than ever. All of our parents and family really helped out buying Allie tons of stuff and filling in my gaps of not being able to go shopping much. Thankfully, I started early shopping for a few things and ordered some things online too so that I didn’t have to leave her. It definitely wouldn’t have been as memorable without everything our families did though.
We stayed in the hospital for several days this time. Thankfully, because it was the weekend, short stay (the rooms made of shower curtains) was closed. After going in to the ED, we were taken straight to a room.
Our first night there, she was given her first dose of antifungal (which brought on a whole new round of challenges–post to come). We stayed for a few days, each day getting two doses. While we were there, the doctors worked with a pharmacy about thirty minutes from us to get the medicine for us in the future.
Before we left, we met our infectious disease doctor and two immunologists. These three people, along with Allie’s plastic surgeon, become some of the most influential people in our lives. For so long, we saw them, texted them, and called them more frequently than most of our family. I will never forget the ID doctor telling me he was praying they would figure everything out. It meant so much to me!
The immunologists were also so kind to us. They sat in the playroom with Allie and I while Hunter went to get us supper. We talked and played. One of them was pregnant and due around the same time as I was due with Andie! We were able to follow our pregnancies together. The other, who we continue to have quarterly follow ups with assured me that there was nothing I could have done any differently as a mother to change what was going on with Allie Beth. In a world of doubt and uncertainty, this gave me reassurance and hope.
While they visited, they wanted blood work to test for Chronic Granulomatous Disease (children usually don’t live to be over 10) and one more disease, but I can’t remember exactly what it was. Praise the Lord both came back negative. At the time, I just wanted answers, a name, a reason, but at the same time knowing that these tests came back negative was a relief like no other.
On the way home, we stopped and picked up her medicine.
After a few weeks at home, enjoying Christmas and the cold weather, we were headed back to Chapel Hill. It was the first week of January now. With no improvement to the wound, even after being on the antifungal, we had to decide what to do. With the team of dermatologists, immunologists, and infectious disease doctors, we decided a debridement surgery was the best route.
We set up a date for a consultation with plastic surgery. I remember the plastics resident telling us he thought we were making the right decision–that when there was any doubt, it was best to just take it out. We were on the schedule for surgery the following week. Honestly, I was relieved. I felt like this was the final step (though I was terribly mistaking). That once we got this out, we could get her healed and not hurting. Then Hunter and I could deal with the stress of the underlying cause of it all. One night, I told Allie Beth that she was going to get better soon. That she was going to hurt a little longer, but soon, she would no longer have a “boo boo.” She would be healed.
The surgery went well! She woke up in a great mood. We had the sweetest team in the PACU, which made it so much easier. Some of them even remembered her story from the biopsy/MRI.
The surgeon had to go pretty deep, but most everything was sewed with the exception of a 2cm by 2cm opening. It looked really good and truly wasn’t very hard to care for at home. We had cream to put on the stitches and gauze with saline solution to pack the wound.
During the debridement, cultures were sent off showing no more aspergillis. This meant that the antifungal was doing its job, but a question as to why she still had this huge, ugly wound that needed debriefing. The doctors suspected some sort of neutrophil dysfunction.
It looked great…until it didn’t anymore. Within a week, this place that had just been cleaned out and was looking great suddenly began to turn colors. It looked as if the flesh all around it was dying.
It was a Friday. We spent all day playing and enjoying the day together. I think deep down, Hunter and I both knew we would be back in the hospital before the weekend ended.
Allie’s immunologist called and asked how everything was going. I told her I was going to send her a picture. After she got the picture and talked with infectious disease, they decided to have us come in for a stay. I asked her the question I’d asked so many times before, “is she going to be okay?” Her response was “I think so.”
Hunter and I sat at the bar in our kitchen hugging and crying together. There is really no fear quite like worrying that you are going to go to wake up your child and her not wake up. That was my biggest fear! That was the worst outcome. My grandma reminded me the other day of me telling her I didn’t want to live in a world without Allie and I meant it. Don’t get me wrong, I absolutely love Andie and I love her just the same as Allie. But at the time, I was pregnant and quite frankly, I was angry at God. I wondered why he was going to take one of my daughters and try to replace her with another. I don’t know that I’ve ever said that out loud to anyone other than Hunter, but that’s truly how I felt at the time.
During all of this, my mom kept reminding me that God was taking care of us. That just as Matthew 6:26 assured, God would take care of us just as he took care of the birds. That’s probably what got me through most everything.
Back in the hospital for the weekend and the plastic surgery resident came in. He decided that they should go back in and debrid again. I put my foot down and said absolutely not. After he left, I immediately called her immunologist and told her what they wanted to do. She agreed that wasn’t the right route to take.
We decided on a last resort, and as scared as I was, we decided to try steroids. They began the steroids while we were in the hospital so that they could watch her the first few days on them. She was now on prednisone and voriconazole, as well as pain medicine after each surgery.
After a few days and no significant events on the steroids, they discharged us to continue taking them at home once daily. We were signing discharge papers and packing our things to go home with prayers that the steroids would make a significant change for the better. Suddenly the plastic surgeon came running up the stairs to our room. She’d been in surgery all day and needed to change into regular clothes. She told us not to leave. She would be right back.
When she came back in, she told us of an idea she had. It was a product called A Cell made of pig bladder and typically used on burn patients for wound healing. I was unsure and truthfully didn’t even want to try it, but Hunter and Dr. —- talked me into it. She told me she would add her to the schedule and if I changed my mind we could call her.
I called the immunologist in the following days and asked her opinion. We decided to go through with it. We went in for the procedure and we were able to go home the same day. I was hopeful, but it turned out to be a disaster. It was so hard to keep urine off of it since it was in her diaper. I was sending her doctor pictures every day. It was beginning to have a very distinct odor and blue colored, soupy drainage.
The surgeon put us on the surgery schedule again for the following day. It was Pseudomonas. This time the wound was washed out again, cultures sent off, and another layer of A Cell applied. We stayed in the hospital afterwards for her to receive IV antibiotics. We were sent home on Cipro twice daily. Cipro had many risks, but was the best chance of getting rid of the Pseudomonas.
We returned every week for three weeks. At three weeks she went back in the OR for one more layer of A Cell. This time it looked much better and stitches were used in place of staples with hopes that she would not have to be put to sleep again. A combination of the A Cell and prednisone were working. Three more weeks passed and we were able to see it. It was such an amazing change from what we had seen in the past. There were still some opening and stitches that hadn’t completely dissolved, but it was headed in the right direction. We continued for a few more weeks of checkups and packing the wound with saline gauze.
About four weeks before my due date, we were told we no longer had to return for weekly checks. It continued to heal beautifully with minimal scaring.
Just a week after Andie’s birth, we returned to Raleigh for a checkup with immunology. We were told that a doctor at the National Institute of Health had been sequencing her DNA and found an ISG 15 (interferon gene) mutation. She was one of about six people in the world with this. A doctor in New York had another patient with this and would come on board for our case.
Since then we’ve made our last visit to check up with infectious disease and plastic surgery, but also to send DNA from Hunter, Andie, and me to see if any of us had anything similar.
Allie’s case still presents some questions, but we are in a much better place now. Her diagnosis means that she is more susceptible to mycobacterium, yet is protective against viruses.
Our family is closer to God than ever with an incredible testimony of His love for us that we can one day share with our kids. In my life, I’ve never had a test of faith or worry really until this because I knew God would take care of us. And deep down I truly believed he would spare Allie because he had great plans for her. I’ve said it all along, but I can’t wait to see what He has in store for her life because I know it’s big!
