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.

Update….

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!

Stay Tuned………

My apologies to everyone who has followed me on this journey this far without any recent information. I hadn’t realized how many people are keeping up with this site for updates on Sarah. I hate not having answers and there is only so much self pity one can write about!

Unfortunately, there is no new news to report nor do we have a definitive diagnosis.   

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.

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.

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.

And So We Wait

Sarah had her one week post-op visit with the surgeon today. They removed her bandage and pulled a tiny thread out from one side of her incision. Sarah was really great, no fussing at all and she even managed to make Dr. M and his nurse laugh. In the days prior to her appointment, Sarah had expressed a lot of concern as to what her neck would look like after the bandage was removed.  I am happy to report it looks great.   You could see how Dr. M made the incision run along the natural line of her neck and jaw. Even now, only one week after the biopsy, you can tell there will hardly be a scar.

Unfortunately, I don’t have any new information as to a final diagnosis. Dr. M and Dr. L have let us know that pathology is still reviewing the biopsy samples and it is inconclusive at this time. We should have more details and information for everyone by Thursday.

And so we wait……..      

THANK YOU

My husband and I would like to thank all of you who have sent us your kind thoughts and prayers for Sarah. The outpouring of love, support and encouraging words through your emails, phone calls, text messages and this blog, means more to us than I could ever express. I apologize deeply for not being able to talk with each and everyone of you personally. I hope you will understand that this is probably the hardest thing we have ever had to face and my personal emotional state has been nothing short of a rollercoaster ride. I have my good moments and my really bad ones. One moment I feel normal and then suddenly, just like that, a random thought filters in and I’m bawling. Under the circumstances, having a crying fit is probably a normal response. I just wish the random crying would stop popping up at the most inconvenient times like, standing on line at the bank, sitting in traffic and while chaperoning my son’s field trip. I feel once we have all the answers, and a set plan of action to help Sarah fight her war, my focus will be on that rather than my own pain and sorrow.

The Incomplete Results Are In

In the last two days I have been on the phone so often with the doctors office that I’m beginning to feel like a stalker. Don’t get me wrong, they have been great and in all fairness some of those calls were made by Dr. L’s nurse to let me know that Dr. L was working with pathology in getting Sarah’s results as soon as possible. Dr. L did finally have an opportunity to call me this evening to let me know that the pathologists have concluded it is 100% lymphoma. Unfortunately, they are still unable to type what kind of lymphoma it is without further pathology study. We should know more by Thursday.

What does this all mean exactly?

Plainly put, my 8 year old daughter who loves animals, singing, coloring, playing dress up with her friends, being a cheerleader and who has not lived long enough to be jaded by the sorrow that life can bring, has cancer. Only question left is what type of cancer does she have?

How does an 8 year old little girl get cancer? It’s not fair. Strong soldiers with lots of training go to war not little girls, not my little girl. My heart is breaking.

The 2% Miracle and The Oompa Loompa Song

Today’s the day we are supposed to get the definitive results from the biopsy.  I am going crazy, no maybe not crazy, just feeling like I can’t function. I have a knot in my stomach and I can’t focus on anything.  I don’t want to go home because I can’t keep still and at the same time I don’t want to do anything.  My mind is racing and I am so jittery that every time my cell phone rings I hit the ceiling like a cat in a cartoon holding on by its claws.  WHY DO I FEEL THIS WAY?   It must be the 2% miracle.

You see, I am not a particularly religious person, not that I don’t believe in a higher power or that I don’t have faith but I feel that I am a realist.  98% is too high a number to ignore.  My rational side has been on full mode preparing for the “war” and gearing up for what seems like the inevitable. Today, rational went out the window and I, like people who gamble or play lotto when the odds are against them, am hoping for that 2% miracle. 

I’ve made the decision to play lotto and change my ring tone from the oompa loompa song. I don’t think I will ever be able to see Willie Wonka and hear that song again without being peeled off the ceiling afterward.

Why a War? Battles are for Bulges and Fights are for Kids in Brooklyn (ya ya I know, I used to be a kid in Brooklyn)

The question was asked why Sarah’s War?  My simple answer is it just seemed to fit. 

Truth is I hated how battle sounded. It reminded me too much of something that was a long drawn-out large scale conflict. I truly hope with all my heart that what Sarah faces is neither drawn-out or large scale. Besides, it seems to me that you always hear of someone losing their battle with something.  

Growing up in New York City only crazy cab drivers and kids on playgrounds picked fights. This is a fight no one would pick.

The dictionary listed the following definitions for the word war:
serious effort to end something: an effort to combat or eradicate something harmful
That sounded right to me, we are going to declare WAR!

The Waiting Is The Hardest Part....or is it??

Blogging is a new concept to me but I felt it was a good medium in which to keep everyone posted and allow me to focus my energy on “Sarah” and the rest of our immediate family. I use “Sarah,” her Hebrew name meaning princess, in the interest of keeping some anonymity as this is an open blog. I hope you understand if you have not heard from us personally but we are still trying to understand the events of the last few weeks.

Our journey begins just like the lyrics in Tom Petty’s song “the waiting is the hardest part.” For the last few weeks our 8 year old daughter “Sarah” has had some unexplained medical issues including a large swollen lymph node on the right side of her neck. Three doctors visits, one trip to the ER, two full rounds of different antibiotics, repeated blood work, and countless labs later we still had no answer and the mass was still there. I say mass because by now another lymph node was getting just as large as the first. During this time I made myself crazy, between the internet and my own medical knowledge (I should have finished nursing school) I was thinking the worst. Waiting for each test result was agonizing. On one hand I was happy when a result would come back negative, but on the other hand things were still unanswered. It was finally decided by all involved that a biopsy needed to be done. Even after meeting with the surgeon, the possibility was still out there that a virus (that did not show up on the labs) was causing this. I could only hope.

On Friday January 22, 2010, surgery was scheduled and a biopsy was done. Sarah was a real trooper that morning considering she was not very happy with the prospect of more needles. I am so glad that she had what I call “happy juice” before they started an IV and wheeled her into surgery. Sitting in the waiting room I thought out loud to my husband “did we put her through this for nothing? Should we have waited another week to see if it went away on its own?” My husband put my mind at ease. I thank God for my husband, his level headed calmer approach to the ups and downs in our life has always been a great source of strength for me. I had no idea how much I was going to need his strength that day. It seemed like we were waiting forever when the waiting room receptionist called me over and handed me a phone explaining that the surgeon was on the line from the operating room to tell me how everything went. I took the phone and the doctor proceeded to tell me how well it had all gone and that Sarah was in recovery resting comfortably and as soon as she started to wake we would be brought back to her. After knowing she was okay my next question was “In your opinion and experience how did it look?” The doctor answered me by saying he would have more answers in about 20 minutes after the pathologist had a chance to look at the biopsy, but it looked like a lymphoma. I thanked him for his candor and said we would see him later. As I hung up the phone my heart sank and I could feel the lump in my throat as I told her dad. My worst fears are coming true.

Back in recovery Sarah was given her own room unlike everyone else who had a curtained off area. I guess this was to give us some privacy as we were met by her surgeon and another doctor, Dr. L, who specializes in pediatric oncology. First thing I said was “if you’re here it’s not good.” I was right, it wasn’t good. The pathologist had looked at the sample and confirmed what the surgeon had seen, that it was “highly suspect for lymphoma.” What does that mean? I pressed the doctors to give me more of a percentage breakdown, something I could understand and explain to our family. 98% sure but further testing on the biopsy would be needed before it was 100%. In the mean time we were given information and an overview as to what to expect as well as an appointment to meet with Dr. L in his office once it was 100% confirmed. Dr. L took our number and put it into his cell phone so he could call us as soon as the results were in. The results should be in by Tuesday.

Question: is the waiting really the hardest part? Or what she faces ahead? And so begins Sarah’s war……………