Tuesday, March 23, 2010

Numb, But Very, Very Grateful

I wish being faced with the question of your child’s mortality is something that no parent would ever have to do. No matter what the outcome is, good or bad, it takes a piece of your heart. The last three months of our lives has been without question one of the most difficult that I can remember. It has taken quite a toll on my emotions with all the unanswered questions, the waiting, the endless waiting and ultimately an answer, if you can call it that.

I finally got the call from Dr. L that I had been waiting for “All the cells are showing benign.” Dr. L explained that they had three separate pathologists review Sarah’s latest biopsy samples. Each pathologist worked independently and all came up with the same diagnosis. “Are you sure?” I asked. I know this may seem like a strange question or reaction but you have to remember I was told that my kid had cancer. “Yes, very sure” was his answer. He then reminded me how unusual a case this was and how we would still need to monitor how Sarah is doing. Even though Sarah has been cleared from having cancer, she still has the mass in her neck, albeit significantly reduced in size since the two surgeries. If the mass stays the same and/or eventually goes away, great! If the mass gets bigger again, another biopsy would be needed.

I know I should be doing cartwheels, dancing in the street and celebrating over this news.  I just don’t seem to have the energy. Don’t misunderstand me, I am so grateful, thankful and pleased that I can’t even put it into words.  It’s just that I’m numb.  It’s so hard for me to explain how I feel right now.  I am so relieved, but at the same time I feel like I have worked myself up for a “war” and I need to wrap my head around all the feelings and events of the last three months.


As the mass in Sarah’s neck has not miraculously gone away, her pediatrician, in an effort to help get to the bottom of what is causing this and her unusual lab results, has referred her to a specialist in infectious diseases. Since there are only two doctors in a two hundred mile radius who specialize in this field, we didn’t expect to be seen for possibly months. Great!  More waiting…..

The infectious disease specialist, Dr. CL, insists on having all medical records (including those from other specialist) faxed to her by the primary physician of any new prospective patient.  Once she has reviewed the records, Dr. CL’s office will call you with an appointment. My understanding is that this way the doctor can determine when to give an appointment based on real need, not just parental hysteria. Sarah’s appointment was made for the following week.

Dr. CL’s office and staff were great.  I have to say it was probably one of the most kid and family friendly offices I have ever been in. It even rivaled Arnold Palmer Hospital were Sarah says she would go back to have surgery anytime (hopefully not anytime soon!)  Dr. CL turned out to be, not unlike her office, efficient, bright and kid friendly. You could tell she had gone over Sarah’s records thoroughly. One of the first things Dr. CL said to me as she flipped through the multiple pathology reports was how she could not even imagine what we all have been going through.

Prior to our visit with Dr. CL a new set of labs were ordered to see if there were any changes from the last set. As it turned out Sarah’s liver function and white cell count were down and within normal limits. These particular lab tests were of growing concern as they had been above normal and getting worse on the previous labs results. I bring this up because at this point Dr. CL is not currently alarmed with Sarah’s lymph nodes. Although, Dr. CL does say that the photograph of Sarah’s neck mass post-op is quite impressive all seems to be going in the right direction at this point. Dr. CL did mention to me that looking at all of Sarah’s records and lab results leads her to believe that, provided all is clear with the pathologists, that this was caused by mononucleosis or the Epstein-Barr Virus (EBV). By the way, Sarah tested negative on several occasions for both mononucleosis and the EBV.

As with everything we have been discovering with Sarah, testing negative or having a false negative on both the Mono and  EBV tests, is very, very rare.  Okay, what else is new with my kid!  According to Dr. CL, both Mono or EBV can affect liver function, white cell count, cause the mass in her neck and is the number one explanation behind a pseudolymphoma.

It’s funny how things seem so connected yet are separated by varying degrees. Ya, Ya I know the expression, six degrees of seperation, but its true. It was not even two days before my visit with Dr. CL, that I was on the phone with Sarah’s teacher, as I had been many times before, and she told me that she had asked her brother, a doctor, if he had ever heard or experienced anything like this. His answer was that only once in the hospital where he worked and that the young boy it turned out had Mono and tested negative as Sarah did. Well there you have it.

The Downside….

Sarah’s oncologist tells me that the incidence of getting lymphoma later on are increased significantly in children and adults who have had Mono and the EBV.  Great, and our family history makes that even better. So what I said in a previous post goes something like this now:  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 that one day may turn into a DUCK.

The one test that has not gone down or returned to normal is Sarah’s blood sugar. With each blood test, her blood glucose level has been above normal. I had always thought Sarah was a bit on the hypoglycemic side since she is prone to headaches and not feeling well when hungry.  Turns out she maybe diabetic.

Hopefully, no more wars for us!