Friday, January 29, 2010

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……..      


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.

Wednesday, January 27, 2010

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.

Tuesday, January 26, 2010

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.

Monday, January 25, 2010

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……………