Chapter 8 - The Biopsy...and Denial

The biopsy was scheduled for Friday, March 14th, 2003. Cyann was 7 1/2 months old at this point, and seemingly well recovered from all of her infections from December. We surgery was scheduled for 3pm, I think. So Cyann was supposed to not have anything to eat after noon. Bloodwork was done just before 1pm to make sure her platelet count was high enough to even do the surgery. That was another issue that had developed...Cyann was "slightly" anemic. Sometimes she was, sometimes she wasn't. Dr. Haws wanted to rule out every possibility, so he wanted not only the biopsy done on her liver and kidneys, but now he added bone marrow to the list. This really scared me. It seemed like just when we'd get accustomed to one thing, new surprises would come up for us to deal with.

Well, the biopsy didn't end up happening that day. The surgeon who would be performing the surgery ran into an unexpected difficulty with the surgery scheduled before us. Ours would be rescheduled for two weeks later. The good news was that on March 28th, when Cyann's bloodwork was done, she was completely in the normal range for platelets and white blood cells. So Dr. Haws cancelled the bone marrow part of the biopsies, to my great relief. He even made a joke about how there is nothing 'textbook' about this kid. She managed to get her platelets up to normal, and her WBC's, too; we may get in there and find out that her kidneys are normal now, too! I knew he was just making a joking remark, but I took it to be a shred of hope that just maybe her enlarged organs were really a result of all of those infections. That they would open up my little girl and find out that things were not what they thought. I was really hoping and praying so hard, that I was already hearing those words in my head, "she's going to outgrow everything. She does not have any disease." So when the test results were in a couple days later, I was completely devastated, all over again.

This time, it felt as if I was reliving all of those days in the hospital, rolled into one day. Scott had accepted the idea of Cyann having ARPKD back in the hospital, so now that it was official, he took the news much better than I did. All I could think about was that someday she will need a transplant. How long will we have with her until then? What will her life be like living with this disease? What happens after the transplant? And what will our life be like with a child with this disease? I didn't know how to deal with this, except to keep on believing that all the doctors were wrong. That Cyann would outgrow this and prove them all wrong.

So that's what I had to do to keep my sanity. Plus, I was working so much overtime during this time. I was the one with the insurance that covered the whole family, and now it was crucial to keep it in place since Cyann would now be classified as having a 'pre-existing condition'. It was during these months, from March to October 2003, that I just completely lost myself somewhere. I was working an average of 54 hours/week at least, yet my work was lousy because I was so tired, physically, mentally, and emotionally. I never got enough sleep, and when I did get more than 5 hours, it wasn't restful sleep. Still having nightmares a couple times each week. Still having flashbacks of driving to the hospital whenever I would drive to work. And when I was home, I only had enough time with Cyann to feed her, bathe her, and put her to bed. About 2 1/2 hours of actual time spent with her. I felt guilty for not spending enough time with her; guilty for not doing my best at work; and guilty for my growing resentment of all of the new moms around me that had healthy babies. I was a mess.

Scott had his own thing going on as well. Still having nightmares and flashbacks, too. I remember the first time she got sick with just a 'normal' tummy virus. After all we'd been through with the hospital visits, the first time she threw up and he knew that she was actually sick, he burst into to tears in a way that I hadn't seen him do before. He was really scared that it was all happening all over again. From the outside, I know a lot of people thought it was an overreaction. But as I mentioned before, no one really understands how deeply this leaves its affects, unless you are actually going through it. So it felt a lot like Scott and I had only each other to really get through each day with. But how much support is there when the person you depend on is just as broken in spirit as you are?

Around the beginning of October, the overtime at my work had been stopped, which meant that I was starting to be able to spend more time with Cyann after work. And I was starting to get up to 7 hours of sleep per night, which was a big step up from before. But then, on October 14, 2003 (which happened to be our 3rd wedding anniversary), we had the first ultrasound since the hospital. I guess in the back of my mind, I was seriously thinking Dr. Haws was going to tell us that either everything was getting better, or at the very worst, still the same as it last was. But he told us that Cyann's kidneys were the size of adult size kidneys, and twice the size of what they should be. He said that she was at 'high risk' for needing a kidney transplant, somewhere in the age range of 8 to 16 years old. This was the first time that we had ever been told about an age range. It was always just 'sometime down the road'. But now with the ages involved, that put a new spin on it. And once again, I felt like all the breath was knocked out of me. This was the first time I really realized how much denial I had been in.