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.

Paper Cuts

I was sent an email from the mother of a bilateral Wilms patient who was able to put into words the things that I could not...at least not in a coherent way. Enjoy.

"Paper cuts still hurt."

That's what I said to a parent whose child didn't have cancer. She was telling me about a problem her child was having that was serious but not potentially fatal. She apologized and gave me what we've all heard before, the "How can I complain about my child when yours has cancer?" thing.

The way I explained it to her is, hey, even for me after diagnosis, if I got a paper cut, it still hurt. Sure, it was put into perspective, but that didn't mean I didn't curse and put my finger in my mouth and whine when I then got hand sanitizer on it.

I responded with how much I loved what she wrote. And how people always walking on eggshells around you can make it feel like there's a death cloud hanging over your head. SageSuperMom responds:

Thank you! Yes, the eggshells...that's still the one I'm dealing with. When people really want to talk to me about it, I try to make them understand how very "ordinary" cancer becomes. (Horrible, yes, but ordinary.) It's driving to chemo and remembering money to pay for parking and your child dropping hair in their spaghetti and saying funny things like, "I'm not sick! I just have cancer!"

I don't blame them for not getting it. I've been in cancer world for 4 years, and I still have the moments where I'm watching a St. Jude's commercial and feeling those things I felt pre-cancer. "Oh, those poor kids," and then having the (excuse my language) "Holy S---, my child has CANCER!" Because there's Cancer with a capital C, the thing you know before diagnosis, and then there's cancer with a little c-- that scary, annoying, and very real thing it becomes afer diagnosis.

And I think there's a vast chasm between the person who feels they shouldn't experience any pain in light of your circumstance and the person who is so completely self-focused, they don't even realize how ridiculous they sound. The "Oh, you're so lucky, you get to go on a Make-A-Wish trip" kind of person.

Nobody really WANTS to go on a Make-A-Wish trip.

Anyway, go ahead, you can complain to me about your problems. Don't feel guilty. I know canker sores still hurt.



Yet another person is shaving his head for St. Baldrick's this weekend! We are amazed by the strangers who are doing this in honor of Eve. Check out Michael's page here.

We had a great time at St. Baldrick's and encourage you to stop by one of their events if you have a chance. I promise, you [probably] won't find any hair in your beer.

What drives you to drink?

Which marathon would drive you to drink first?

6% of you said Dungle Book (Jungle Book).
4% of you said Doe Wipe (Snow White).
89% of you said Dowa the Expluhwa (Dora the Explorer).

But you know what is really going to drive me to drink? This on-again, off-again relationship with radiation-oncology.

So, it's like this:

Left kidney is A-okay.

Right kidney is resected. Almost all of the tumorous areas were necrotic (favorable histology). However, there was one small spot that had viable cancer cells in it. Since it is a small area and not all over the place, this is called focal anaplasia (unfavorable histology). Favorable histology, smaller cells, easier to treat and cure. You can probably guess what unfavorable means.

Technically, with Eve having bilateral Wilms tumor, she is considered Stage V. But, they do stage each kidney individually and both of Eve's were Stage I, meaning the tumors were only in the kidneys and were completely encapsulated.

This all sounds fine and/or dandy. There are pathology reports to read and protocols to follow. But we all know Eve is complicated, no?

Apparently no other kid has been treated like Eve before. I guess that's something she can brag about at sick kids' camp.

According to Dr. WilmsExpert up in D.C., the focal anaplasia adds an "interesting wrinkle" to the case. Nobody wants to be a wrinkle, no matter how interesting it might be.

Normal Stage I treatment is surgery and a two-drug chemo. Eve has already been on a three-drug protocol, which is usually used for higher staged cases. There is no data on kids who have been on a three-drug treatment with Stage I Wilms.

There is a study which shows kids who have been through the Stage I treatment are more likely to have a recurrence than children with more advanced staging who are treated more aggressively (i.e. radiation).

Are you still with me? It's ok. I'm not even sure I'm still with me.

Sooo...now everyone's going to pretend that Eve has unilateral Wilms since her left kidney is so hunky-dory. Just focusing on the right kidney, this anaplastic histology screams, "RADIATE ME!" And that's what we're going to do. I know, I know. You have questions. What exactly are they going to radiate? I thought they removed that kidney?? Good question! They are going to radiate the tumor bed, or where the tumor was. Just in case one itty-bitty cancer cell mysteriously found a way out of the totally encapsulated kidney that was removed. Because, with Eve, it totally could happen and you know it.

There's also no data on kids with Stage I who have been given a three-drug treatment AND who have been radiated.

Protocol? We don't need no stinkin' protocol.

Refresher Course

Now, you too can be on your way to becoming an oncologist! (Or, at least sound like one.) Impress people at the dentist's office, Jazzercise, and fondue parties with your new vocabulary!

Here's a handy reference guide for those of you who want to know what's going on, but don't want to go back and start from the beginning.



The Treatment Plan we received from Duke:

"Your child has been diagnosed with Wilms tumor. Wilms tumor is a type of cancer that occurs in the cells of the kidney. Your child's disease is considered higher risk because there are tumors in both kidneys (bilateral Wilms tumor).

"The most common way to treat bilateral Wilms tumor is to give two common anti-cancer drugs (chemotherapy with Vincristine and Dactinomycin) to shrink the tumors and then to do surgery to remove the tumor tissue. In some cases, an entire kidney and part of the other kidney are removed. Sometimes radiation therapy (treatment with high energy X-rays) is also done.

"There is some recent evidence that giving one extra drug (total of 3 drugs) may help get rid of the tumor cells while saving the largest amount of normal kidney tissue. This would not be considered 'standard' therapy."


The drugs:

1. Vincristine Likely side effects include hair loss, reversible neuropathy, and constipation.
2. Dactinomycin Likely side effects include nausea, vomiting, hair loss, and a drop in white blood cells, red blood cells, and platelets.
3. Doxorubicin Likely side effects include nausea, vomiting, hair loss, a drop in white blood cells, red blood cells, and platelets, and damage to the heart muscle.
   

(I will spare you the "less likely" and "rare but serious" side effects. Trust me on this one.)


The port:

Eve's port is a long, soft tube (central venous catheter) that was inserted into a large vein that leads into the heart. It is completely implanted under the skin. It is used to take blood, give drugs and IV fluids, and transfuse blood. We put Emla cream over the bump in Eve's chest where the port is to numb the skin before the port is accessed. The port is a blessing and a half, and then some.


Bone Marrow Suppression:

The bone marrow is where white blood cells, red blood cells, and platelets are made before they are released into the bloodstream. Chemotherapy works by blocking cell growth which includes both cancerous and normal cells. This causes low blood counts.

1. White blood cells (WBC) fight infection.
2. Red blood cells (RBC) carry oxygen to the body's tissue.
3. Platelets (Plt.) prevent bleeding.

Eve must have an Absolute Neutrophil Count, or ANC, of 750 or greater to get Dactinomycin and Doxorubicin. The ANC is an estimate of her body's ability to fight infection. If it is under 500, she is considered neutropenic, which means she is at a higher risk for infection. The ANC is calculated using a sub-type of white blood cells called neutrophils, which are most important in fighting dangerous bacterial infections, and bands, which are immature neutrophils.

For anyone who likes to geek out to this type of thing, the equation is:

WBC x (%Neutrophils +%Bands) = ANC

Although Matt likes stuff like this, I am happy the doctors at Duke always do the math for me on chemo days. On the days I have to take Eve into her pediatrician's office for those in-between chemo blood checks, I call Matt on my way home and rattle off some numbers and let him compute to his heart's content. He and Texas Instruments go waaaaay back...


Our home pharmacy:

1. Septra, twice daily, three days a week, to prevent pneumocystis pneumonia.
2. Miralax, daily, to prevent constipation.
3. Lisinopril, daily, to regulate blood pressure.
4. Zofran, thrice daily, for 48 hours following Doxorubicin and Dactinomycin administration to prevent nausea.
5. Reglan, to prevent nausea if Zofran doesn't work.
6. Benadryl, to be given 30 minutes before Reglan.
7. Emla, to numb port site 30 minutes before access.
   
8. Flintstones Vitamins, because it can't hurt, right?

Scans and tests:

1. Complete Blood Count (CBC) gives us the number of WBC, RBC, and Plt. This test is done before chemo and a few days after chemo.
   
2. Differential indicates the percentage of each sub-type of WBC. This is done with the CBC.
   
3. Ultrasound (U/S) uses sound waves to detect changes or abnormalities. Eve has had two of these; the first time showed the presence of tumors and the second time showed how much they were shrinking from the chemotherapy.
4. X-ray is electromagnetic radiation. Eve had an x-ray done after her port surgery to make sure it was placed correctly.
   
5. CT Scan is an x-ray test with a special machine that rotates around the patient, giving cross-section pictures of the body. For Eve, this provides better imaging of the kidneys and tumors than an MRI. She is sedated for these scans so she will be still.
   
6. Magnetic Resonance Imaging (MRI) uses magnetic waves to see inside the body. For Eve, this gives better images of the blood vessels inside of the kidneys which is important for the surgeon. She is sedated for these scans so she will be still.
   
7. Echocardiogram (Echo) is an ultrasound of the heart. Eve has had two echos- once before the start of chemo and another at week 7 to make sure her heart is okay from the Doxorubicin.
   
8. Electrocardiogram (EKG) studies electric signals of the heart. Eve has had one EKG prior to the start of chemo.

(Did you make it this far?)


After the surgery:

We wait for the pathology report to come back from the tumors. The doctors need to see how the tumors responded to chemotherapy in order to decide what the therapy post-surgery will be. There will definitely be more chemo and perhaps some radiation.




I hope you got all that. There will be a test in the morning, folks.