Saturday, February 6, 2010

Why Can’t Things be Black or White? DISCLAIMER: I’m Not a Doctor and I Don’t Play One on TV. Duck vs. BUNNY

It would be nice if the tough questions in life could be answered in simple black and white terms with no shades of grey or color. Getting answers with a straightforward yes or no, good or bad, easy or hard would be so much simpler to deal with. Most people know that if you have lived on this earth long enough to have attended kindergarten, you learn pretty quickly that crayons, as in life, come in more colors than black and white and at times life is not easy or fair.

I know that many of you, including our families, have a lot of questions. It’s been tough for us to understand this process as well. Quite frankly, the few times I have talked about it or tried to shed light on the developments, I’m always left feeling that I didn’t explain it fully or that I didn’t make sense. It has always been important to me when talking about something, that I’m understood and that I’m expressing myself clearly. I am also a person who likes details in a story, so in general I tend to over explain and give a lot of information. This has not been necessarily true in this case. You see, I have not given every account of every conversation or the details in which Sarah’s doctors have explained things to us. Part of the reason for this is it can be difficult for me to re-explain exactly what the doctors have told us, while at the same time trying to convey their medical explanations and sincerity. I will try to do that now.

First let me reassure everyone that Sarah’s father and I are not the type of people to follow directions just because a doctor or any other “authority” or “expert” says so. We are both fiercely protective of our children and when it comes to their health and education we are even more so. I am an adamant believer in researching a professional’s background and reviews. I also feel strongly that you need to look at a professional as one part of a whole picture. In other words, when you choose a doctor , how was he recommended, how is his demeanor with you and/or his patients, does he answer your questions, how is his office staff to deal with and other things that you can think of along those lines. Sarah’s team, and I use the word “team” because that is how they are working together and how they see themselves, are without a doubt giving her the best care possible. On Sarah’s team we have the following players: pediatrician, oncologist, surgeon, pathologists and all their nurses and staff including those at Arnold Palmer Children’s Hospital.

I’m not a doctor, nor do I play one on TV. That said, the best way I can describe the need for another biopsy and the pathologist’s inability to conclusively come up with a type of lymphoma is that the science of pathology is not an exact science! Huh? What? You say….Well, lymphomas are not easy to diagnose and require many, many slides that come from the biopsy tissue that has been thinly sliced and processed by staining, freezing or some other kind of laboratory method that I don’t fully comprehend. My understanding is that there is no real “eureka” moment for a pathologist but rather a careful series of observations and deductions. In Sarah’s case, the two pathologists that have been working diligently on her samples each have over 20 years experience specific to lymphoma. Apparently, Sarah’s lymph node has all the characteristics of a lymphoma without the pathologists being able to discern its type.

It is very uncommon that a full diagnosis is not able to be rendered using what is normally a more than adequate sample of tissue. There are two possibilities for this to happen, not finding the cancer cells and/or a pseudolymphoma. Finding cancer cells is not always so easy. Here’s how I explain it: you make a cake and in the batter you throw in 20 sesame seeds. You bake it, frost it and cut the cake in ½ . You then take your half of cake and start cutting smaller and smaller slices looking for 1 or more of those sesame seeds. Even though you cut the cake in half , all the seeds may still be in the other half. With pseudolymphoma: it is a rare benign process that is characterized by an infiltration of lymphoid cells or histiocytes which microscopically resembles a malignant lymphoma, therefore, often causing problems with a differential diagnosis. Translation: if it looks like a duck, quacks like a duck, acts like a duck it still may not be a duck but rather a BUNNY in a really good costume.

According to Dr. M and Dr. L, pathologists are not a proud group and will always seek a second opinion or confirmation from known experts within the field if they are unsure. This would also include sending samples to the FBI of pathology, The Armed Forces Institute of Pathology in Washington DC. Since all the tissue was used in the initial testing without a full conclusion, an additional biopsy was needed.

To give everyone an idea of how uncommon this is, Dr M has been a surgeon over 20 years and has only needed to go back for more of a sample once in the last 10 years. Dr. L has been an oncologist for 10 years and this is the first time in his career that this has happened. One of the pathologists has experienced this type of case twice in 23 years and the other pathologist only once in his 20 years of experience. All agree this is very rare and unusual, but not something that is unheard of. What can I say, leave it to my girl to be rare and unusual.

As of this post, Sarah has undergone her second biopsy and seems to be recovering better than the first time. If you know my Sarah, you know that she does not tolerate pain well and she can be quite the diva. I was truly expecting much worse the second time around. I am very surprised and pleased at how well she is doing considering she was not as comfortable for at least two days following the original surgery.

We should know more by the end of next week. So in the meantime, as my husband likes to say, we hurry up and wait and hope that they pull a BUNNY out of a hat rather than a duck.

Wednesday, February 3, 2010

Round 2 Déjà Vu

I am exhausted as I write this, so it will be short and to the point. I will elaborate in a later post.

Today we met with Dr. M for a follow up visit and final outcome of the biopsy results. I wish I could say that we were closer to having an answer or a plan of action than we did two weeks ago. Sadly, the pathologists were unable to come up with a full diagnosis. Sarah will need to undergo another biopsy to collect additional tissue for testing. She is scheduled for surgery this Friday.

Sunday, January 31, 2010

Sarah and Her Bubba

Sarah likes to call her older brother “Bubba.” The nickname “Bubba” always brings to mind images of good ol boys from the south who like to fish, hunt, watch car races and wear camouflage clothing as a normal part of their daily wardrobe.  Although our 12 year old son does like to fish and has an appreciation for the Dayton 500, I can assure you the similarities end there. Since Sarah is the only one in our family who was born in the Deep South, we figure it must be something that comes naturally for her to call him Bubba. When he is not driving her nuts, as big brothers do, she has been known to say “I love my Bubba.”  

One of the more difficult things my husband and I have had to handle is deciding how to tell Sarah and her brother what is happening. Our kids are about 4 years apart in age so we felt that discussing it with them separately would be the best thing to do. After the initial biopsy had been done, and before we were at this point, we sat down with each one of them to talk.  For Sarah we decided to break it down into simple terms explaining that all the tests and surgery will let us know what is causing the lumps so we can give her the right medicine and treatments.  For Bubba we stepped it up just a notch and made a deliberate choice not to use the word cancer in an effort to avoid scaring him.  Bubba is a smart kid and not much gets past him. One of the first questions he asked us was could it be cancer? We explained that it was one of the possibilities.

At this time, since things are inconclusive and we don’t have a plan of action as yet, we felt it would not be a good idea to get into any more details with the kids.  Like most parents, we want to have all the answers for our children and right now we just don’t have them.