2/22/10 - Most Common Questions

I just wanted to address a few questions that are asked to me quite often. Not that I mind answering them ever, but these are the most common questions I get and their answers, in case you have ever wanted to ask:

-How did you find out Brinley has cancer?

I guess if you went to the very beginning of our blog you already know this, but that seems a lifetime ago, so I will retell her diagnosis story. We were visiting family in Las Vegas in August '08, and Brinley fell all of a sudden on the carpet and wouldn't stop crying. None of us could figure out what had happened, but she wouldn't walk the rest of the day. She began walking with a limp the next day, and had a slight limp for 2 weeks after that. I finally took her in to my pediatrician and asked if he could check her out. He didn't see a limp at all, but I'm the mom, and I saw a limp. So he sent me to get her x-rayed and the found that she had fractured her tibea. We were referred to the fracture clinic at Primary's, where we were told she had NOT fractured her tibea, but that there was an "irregularity" on her bone, and this is something normal. One week later, we went to the park and Brinley took a step back onto a stair, and cried out in pain again. She wouldn't play the rest of the time and kept crying, so I took her to the ER that night, and they said she HAD in fact fractured her tibea, but it had started to heal already, since it had been 3 weeks, and so we kept a soft cast on it for about a week.

About two weeks after THAT in the beginning of September '08, Brinley tripped inside our house right on the carpet, and once again, cried in pain, even worse than before. We saw that she had barely tripped, and did not think it could possibly be fractured, but at 5am she was still awake, in pain, the Tylenol barely touching it, so David took her again to the ER. An x-ray showed a femur fracture. David called me about 7am and said they were probably going to keep her because it was odd for her to have 2 broken bones in such a short period of time and without major incidents. I began to panic, worked out babysitting and started driving to the hospital. I called my mom in tears, and she got onto the good old internet to research what could be causing this. She came across several options, then briefly stumbled onto cancer. It made my heart skip a beat, but we both quickly brushed off that option, that couldn't possibly happen to my family. When I got there they talked about sending her home, but I was not comfortable with that, and thankfully, neither was the radiologist. He later told me that he KNEW something was wrong with her x-rays and pushed really hard for them to run some tests. About a year later, during one of our ER visits, the doctor who saw her was our doctor again with one of her fevers. She told me she remembered everything about that visit, all the way down to the room number we were in, because Brinley was in so much pain, she felt so awful for her. She told me they talked about it being cancer, and they all thought it might be that, of course they didn't mention that to us.

The next day she got an MRI looking for a bone infection, the most likely culprit. I was lying in the hospital bed with Brinley, who was in a great deal of pain, and David walked out for some food. Three doctors came in and stood over me and told me that they saw some weird stuff in her bone marrow and they thought it was leukemia. They were about 80% sure of it. It was devastating. I looked at her, finally sleeping, and cried. When David came back they told him, and we both cried together. It was a day I will never forget. They did a bone marrow biopsy, which confirmed it was leukemia, and she got her broviac line put in and received her first dose of chemo the very next day, as she slept peacefully.

-I thought Brinley was in remission, why is she still in treatment?

Yes, Brinley is in remission. They got her in remission within the first month, which is what they hope to achieve. I was warned to be very careful with throwing around the word "remission" because it gives the false notion that treatment is over and all is hunky-dory. So while I will say my daughter "has" leukemia, I say that because she is still in treatment for it, however, there is no evidence of cancer in her marrow right now. What they have found is that if they don't continue to treat the cancer as if it was still there it will come back, guaranteed. Brinley's particular diagnosis, Acute Lymphyblastic Leukemia, has a 2 1/2 year treatment for girls, standard risk, and a 3 1/2 year treatment for boys. So she will be in treatment during the entire treatment protocol, regardless of remission. So yes, she is in remission, and no, life is not back to normal for her.

-Why is her hair growing back if she is still in treatment?

The first phase of treatment caused her hair to fall out. For the first 7 months, she received chemo once a week, several different types, many of them that kept her hair out that entire time. After the first 7 months, her chemo changed to once a month for IV chemo, and a daily oral chemo that does not cause hair loss. The medicine that caused her hair to fall out is not being given enough to cause hair loss. A very small percentage of children lose their hair again in maintenance. For the most part, children in maintenance look very normal, you would never know they are battling cancer. It can be deceiving because we expect children who are in the middle of chemotherapy to be bald and look sick.

-When will she be in the clear from the cancer coming back?

That chance will always be there, but here is what will happen when she goes off treatment in November. She will get checked every month for the first year, then she will got to every three months. That will happen for 5 years, then she will be considered "cured" and will have as much chance as any normal person of getting cancer. It is difficult to get statistics since research is ongoing and simply takes time to gather data.

-Since her immune system is so weak, can't she take an immune booster to help her fight infection?

This is one of the most common misconceptions. NO. Brinley's immune system is SUPPOSED to be suppressed. In order to get rid of the cancer cells, we have to kill all immature cells, good and bad. So if her white count is low, we can assume the cancer cells are mimicking those cells. The trick is keeping her immune system suppressed enough to not give the cancer cells an opportunity to multiply, while keeping her out of danger from infection with no white cells to fight bacteria. Any immune booster would multiply those white blood cells, and in turn be working against the chemo, multiplying cells that we are trying to suppress. It's all part of the dance, we just have to be careful of infection while she is immune-compromised.

-Why does she have to go to the hospital every time she gets a fever?

Since her immune system is suppressed, she is at high risk for infection. A fever in an indication of an infection. Nine times out of 10, it is NOT an infection. For example, we have been to the hospital for fever dozens of times, and only one of them turned out to be a blood infection (sepsis). And that one time was very scary, Brinley got very sick very fast, she was in-patient for a week and lost her broviac line because of it. So while every fever is not life threatening, (just a pain in the butt!), there is always that chance that she has sepsis and they take that very seriously. I am supposed to get her to a hospital within an hour if the fever is above 101, and she should be administered antibiotics with an hour of arriving at the hospital.

Another risk factor for infection is her port. Anytime there is something foreign in the body, there is an infection risk. And since we access it and inject things into her bloodstream there, there is always a chance to introduce bacteria into the bloodstream. So until her port is removed, she will have to get a culture with each fever to make sure she is not septic.

-Do you still need help?

This is a very hard question that I get asked a lot. Yes and no. There are times my life is a normal crazy like everyone else, so I would need help the same as anyone staying home with 4 crazy kids and way too much housework. Then there are times I wish I could send out an emergency S.O.S., when I am in real trouble. It would be nice if I could send out some kind of smoke symbol from my house, (like in old times before the telephone), that lets everyone know that I am in desperate need of help. Haha, that is a funny picture. Kristin is in trouble!! That would be so much easier than picking up the phone and just asking someone for help. How crazy is that? I know I have amazing neighbors who would rush to our aide if I were to do that. The problem is I can't seem to ask for help when I need it. So it's my own fault, because there is not a constant need, so people don't know when I do need it, yet I hate to inconvenience anyone else who is in the middle of their own crazy lives. I don't know that I will ever be able to do it unless I absolutely have to, like needing someone to watch the kids while I run to the hospital with Brinley. Just to do that is torture for me. I do have some wonderful friends and neighbors who ask me quite often if I need any help. I am lucky.

-How did she get cancer?

I guess it could be a hundred things, how can we ever know which one? I've been told too much milk, not enough milk, hot dogs, living close to a power line, not eating organic food, the speculation goes on. Honestly, we just don't know, and I imagine each child with cancer would have a different answer. It just happens, a cell mutates, and cancer is born. If there were one answer to that question they would have found it by now. I hope to know the answer to that someday, but I can't dwell too much on it or I will make myself crazy wondering if it was something I did wrong.

There you have it, the most common questions I get asked. If I missed anything and you have a question for us, I would love to answer it, just leave it as a comment.