Thursday, April 15, 2010

Don't get cancer on a Friday.

I realize I have never written in detail about the day Eve was diagnosed with cancer. The following is my PSA for the importance of well-baby visits.

Monday, October 19, 2009: Eve's 2-year check-up.
Everything went well until the pediatrician started feeling her abdomen. I've seen him do this to my kids at every check-up and have never thought anything of it, much less what he was feeling for. He seemed to be concentrating on the right side of her stomach for a little longer than usual, which was noticeable to me but not alarming. He then asked me to try to feel this "ping-pong sized mass" he felt when he was trying to find the liver. The doctor sported a pretty good poker face, finished the rest of the exam, and went to find another doctor to come in and feel Eve's ping-pong ball. At no point did either doctor make me feel scared of what might lay ahead. They recommended an ultrasound to check it out, and I made a Friday appointment at Wake Radiology. Had I known there was something in there that doubles in size every ten days, perhaps I would have scheduled it for Tuesday.

Friday, October 23, 2009: The worst day of my life.
I woke up at 7:30, having only gone to bed two hours before. I stayed up late making a few cakes, but the power nap would have to do. Again, had I known the day ahead of me, I would have canceled the cake orders and rested up.

I dropped the kids off at preschool while Matt drove Eve to Wake Radiology for her ultrasound. I didn't feel like the scan was a big deal, but Matt insisted on going. (Again, a good call on his part.) I drove out there to meet them, nauseous from the lack of sleep and lucky I didn't kill myself or anyone else on the road. I found Matt and Eve in the waiting room, the child a little bit aggravated from being NPO. Little did she know this would be one of many NPO days, otherwise days known as "Mommy needs a glass of wine."

After what seemed like a long wait, they finally took us back and Eve did a great job of holding still while the ultrasound tech took pictures of her kidneys. Now, I am no expert at ultrasound pictures, as I could barely make out if I was growing a human baby or a chinchilla inside of me when I was pregnant. But I did ask what was being scanned, and when she said the kidneys, I had a feeling that those large black spots probably shouldn't be on them. However, the tech did not seem concerned and kept chit-chatting with us before going to get the doctor.

The doctor came in and looked at the pictures, then asked for the tech to do it again. She whispered something and then said she had to go call our pediatrician. This is when the sinking feeling in my stomach began and would stay for the next few days.

When the doctor returned, she said something along the lines of, "I'm sorry to be the one to tell you this, but there are masses on her kidneys. Your doctor is expecting you at his office right away, and he will figure out what oncologist you will need to see. It looks like it is consistent with Wilms."

I knew what oncology meant. She didn't have to come out and say the C-word. This would be the first time I had ever heard the name Wilms.

I could absolutely feel the color drain out of my face. I remember the feeling of my whole body shaking and my heart pounding, and all the while trying to smile at Eve, because the child had no idea what she was in for, and I didn't want to clue her in.

We went straight to the pediatrician's office. I had Matt drive me, because now that I was fully awake, I was also just as likely to kill myself or someone else from sheer hysteria. We got to the waiting room and put Eve down to play with the toys. I sobbed and sobbed and sobbed. The receptionist asked if we wanted to wait in a private area, but for some reason I looked at her like she was crazy and told her I was fine. I'm pretty sure I was scaring the other parents in the waiting room.

A nurse took us back to an exam room and our pediatrician came in after a few minutes. I'm sorry. Though meant to be comforting, "I'm sorry" just made my mind jump and add "that your kid is going to die." We asked what Eve might have, and he mentioned the words Wilms and neuroblastoma. Whatever else he said remains foggy to me.

The first order of business, could we give Eve something to eat? She had been up for five hours without any food or drink. The doctor let us give her some milk and he brought her a few cookies. Next item: what hospital do you want to go to- UNC or Duke? That choice was easy. As NC State alumni, we run an ABC household. (Anywhere but Carolina.)

The doctor left the room to call Duke and make arrangements for Eve. I figured Nat and Dan shouldn't hitchhike home, so I needed to figure out how to get them out of preschool and to someone else's house. I didn't have the preschool's phone number in my cell phone, so I called a friend to ask for the number. I remember she asked if I was okay and I said no, without any explanation. Thankfully she didn't press me about it, because I don't think I could have said the word "cancer" without breaking into the ugly cry. Meanwhile, Matt called another friend of ours and made arrangements for her to pick up the kids.

I called the preschool receptionist to let them know my friend was going to be picking up Nat and Dan. About ten minutes later, one of Daniel's teachers called to let me know he had a fever. She must have thought I was the worst mom ever, because I told her that I would not be coming to get him, and she could tell my friend who was picking him up that he had a fever. My friend has a mild case of germophobia, but I figured cancer trumps fever. Thank goodness for good friends.

Matt and I were still completely unaware of how our weekend would be spent. When the doctor returned, we were still under the impression that we were going for an appointment at the children's clinic at Duke and would be leaving when it was done. I don't remember how it came up, but the doctor told us no, we would not be going home. Pack your bags because she will be admitted. It kept getting more serious and serious-er! Oh, and don't feed her anything else, because oncology will want to do more scans and she will probably need to be sedated for them.

I don't remember if we talked on the way home, but I do remember looking at Eve a lot and feeling horrible that she seemed so unaware of what was going on. Even though that was a blessing, it still seemed terribly wrong. We arrived at the house and I wandered around aimlessly trying to figure out what was appropriate for a 2-year-old's hospital stay while Matt made the family phone calls. I called the person who ordered the cakes and let her know that I would be leaving them at my friend's house, and she asked if everything was ok. "No, my daughter has cancer." That is like the opposite of ok. But as soon as I said it, I realized how I left her with no options of saying anything that would leave her feeling comfortable with the conversation.

It was a very surreal day. I kept wondering if this was really happening or if it was some chocolate-induced dream that I couldn't wake up from.

We got to Duke that afternoon around Eve's normal naptime (though she wasn't going to be napping) and made our way up the elevator to the fourth floor, Hem-Onc clinic. It was pretty empty, so we were immediately taken back to a room. This is another blurry memory, but I do remember two nurses having the pleasure of putting an IV in Eve's arm. And by pleasure, I mean they enjoyed it about as much as Eve and I did, although they never let on. That's why it takes special people to work with kids, you know? The oncologist came in, felt Eve's belly, and repeated what our pediatrician said about it most likely being Wilms or neuroblastoma. He said some other stuff that escapes me now, but I do remember the most important thing he said: Whatever happens, we have a plan.

Eve had her belly felt by a few other doctors and then we were taken to the main hospital and admitted. So far, even with being starved and skipping her nap, Eve had impressed everyone with her demeanor. Although the sedationists had all left for the day, there was talk of having Eve do a CT scan without sedation. She seemed calm and cooperative.

When we got into our hospital room, two residents came to do another exam and ask the same questions we had been asked four times before. My mommy radar went off when one doctor wanted it noted that Eve's tumor was painful. I told him it was not hurting her, that she was just very tired and hungry and was sick of being poked. She had not cried or winced once when the previous dozen doctors felt it. He ignored me and wrote down his version, which earned him a big black X in my book. Don't mess with Mommy.

We were told not to let Eve have anything to eat or drink because they were trying to get a CT scheduled at any moment. This was one of the longer moments of our lives, from 4-10:30 p.m. What do you get when you take a two-year-old and deny her sleep and food? I'll give you a hint: it's horned and rhymes with hatin'.

The resident's plan was to give Eve some Ativan and Benadryl to calm her down and let her have the CT without sedation. At 10:45 p.m., we were wheeled down to radiology. Eve appeared very drowsy, although it was over three hours past her bedtime and she was just given some meds to "take the edge off." The timing of the scan made us think that Eve's situation needed to be diagnosed ASAP.

I tried laying her down on the scanner. No dice! It was like someone gave her a shot of Red Bull and some liquid nightmare.

The resident decided to give her some more Ativan. She looked as though she might fall asleep on my shoulder, so we tried to lay her down again.

Nope. Not having it.

I told the resident it was not going to work and asked if we could just wait until someone could sedate her before we did the scan. It was close to midnight and everyone was miserable. But in his infinite wisdom, he gave her not a third, but a FOURTH dose of the drug before she was screaming so loud that he decided it might not be working. I'm not sure what medical school he attended that led him to make such astute observations and hypotheses. His next brilliant idea was to let her fall asleep in her hospital bed and then wheel her down to radiology and try the scan then. Maybe because Wilms is relatively rare, he wanted to be the first to see pictures of it in Eve?

We went back upstairs to our room and listened to Eve scream inconsolably until 4 a.m. We could do absolutely nothing to calm her down, which I reckon is the definition of inconsolable. The nurse kept coming in and commenting how some kids react like this when given Ativan (our first clue that Eve was special). Finally, the doctor came in and decided maybe it wasn't a good idea to try to get the scan in the middle of the night. He concluded that she might be upset because she was hungry, so we could give her some crackers. Seriously, he came up with that all by himself.

Eve feel asleep a little while later until we were awoken at 7 a.m. for blood work. So, between Thursday night and Friday night, I got 5 hours of shut-eye. Please forgive me if what I have typed does not make sense, because it was put into a memory that was severely sleep-deprived. And not to mention NPO. WE WERE ALL NPO.

Saturday, October 24, 2009: the CT.
The hospital was able to find an anesthesiologist who could come in and put Eve to sleep for the scan on Saturday morning. The doctor gave Eve some of the good stuff that only anesthesiologists can. She was taken away for the scan and we were left to our own devices again. Terrible things can run through your mind at a time like this, but none so terrible as what may happen if you came across that resident from last night again.

Saturday and Sunday were big blurs. There were plans made and plans canceled. There were visits to and by every -ologist in the hospital: hematology-oncologists, radiation-oncologists, nephrologists, cardiologists, dermatologists, opthamologists, radiologists, anesthesiologists, plus a geneticist for good measure. (We are still getting bills from this weekend.) And the worst part was the waiting. People don't do business on the weekend.

It would be a couple of days before pediatric oncologists all over the country opened up their email and saw Eve's case, and then some more time before they typed up an opinion and pushed "reply."

Which brings me to the moral of the story: Don't get cancer on a Friday.


  1. Because of this - my poor children get their abdomen checked and double checked and triple checked at doctor's visits now. I always noticed this part of the visit - never knew exactly what they were looking for - but was completely aware that they were trying to feel my child's spine through his belly!! You are holding together a whole lot more than I could!

  2. Haha! It certainly does seem like they are trying to get to the spine by way of the belly button!

  3. and here you are. one chemo left. exhale.

  4. Flashbulb moments, huh? I remember ours, for The Boy: standing in the office when the pediatrician told us what it was; lying together, the 3 of us, wondering what was happening to us; the first time we were admitted to the hospital. Freaky.

  5. {{Hugs}} I so feel for you, I picked My daughters Lump up myself and pushed through the Dr etc but it is all a blur in my mind that first few days when I found a football in my 4 yr olds tummy ARGH we are over 12 months since Diagnoses and still not NED as she had some in-operable areas but prey every day to see the end, finally at the scan only part though, hope you get through this with a good future for your little princess♥

  6. I can only laugh in sympathy Christy - we have been there done that (and got the tee-shirt) for the late night, and on the weekend stuff at Duke. Been there for scans at obscene hours of the night. Oh my - your blog brings back some memories.
    Makes me wish now I had written down more stuff when it happened so I could share it with the world (but alas several years later I forget)

    Eve and Rebecca are on separate roads of childhood tribulations that kids should never go through- but they will both reach the same triumphant end.