Friday, December 17, 2010

On the verge of heartbreak.

First off, I want to thank everyone for their prayers and well wishes. I have received hundreds and have cherished each and every one. They mean the world. Thank you. I just don't have the capacity to respond right now.

So, yesterday really did not go how I suspected. I am sure that this entry will come as quite a shock to many that talked to me yesterday. The scan actually went okay. I don't know if I had my parental rosy blinders on but, during the scan, I really did not see anything. For some reason though, against what I am sure is hospital policy, I snapped a picture of the screen on my iPhone.

At that moment, I did it for reassurance.

To me nothing was glaring on the scan. There was an issue with the bladder but that was not expected to be disease. It is funny how your mind plays tricks on you. Here I am somebody that has been exposed to as many MIBG scans as a parent possibly could be and yet I somehow missed some fairly obvious things. Yet, another indication of my fragile mental state.

But still, I would not notice these little nuances even though I would review the scan many times throughout the day. After Sydney finished, we took her back to back to school and visited all of the kiddo's Christmas parties. There were even a few parents there that I took the opportunity to show Sydney's scan to. - Yet, another violation of a hospital policy I am sure.

I still did not notice anything...

The kiddos got out early from school and, for a nice change, I got to spend some quality time with them all afternoon snuggling on the couch watching movies. It was so wonderful. I have been so busy lately this had been one of the first times in quite awhile that I just got to sit around with them and do nothing.

I loved every second of it.

In fact, I loved it so much I totally missed the fact that Graham and Sydney both had belt testing at Tae Kwon Do at 5:30PM. Thankfully, Lynley was somehow still playing with a full deck of cards and was there to make sure we made it on time. When I arrived, the first question on Master Adrian's lips was "How is Sydney?" It was in showing her the scan that 2 subtleties in it started to appear - one on her right shoulder, and one on her sternum. Watching the belt test was tough. The kiddos both did spectacularly. They both broke boards with flying kicks. They both sparred beautifully and the forms and one steps were perfect. While I will tell you that I watched every aspect of my own kiddos performances, I must admit that I spent the rest of the time staring at the scans and comparing them to others from medical journals on my phone.

Now, I will be really honest with you. I saw scans that included hot spots just like the ones that I had captured on Sydney in kiddos with perfectly clear MIBG scans. I could easily blame the spot on the shoulder on brown fat and I can even provide you some references of scans where the hot spots were symmetrical but had more intensity on one side than the other - just like in Sydney's case. Furthermore, I can show you several scans that have something that seems to almost wrap around the sternum at about heart level - very similar to Sydney's. All of those were also on scans that were deemed clean by neuroblastoma experts. (See 123I-Metaiodobenzylguanidine Uptake in the Nape of the Neck of Children: Likely Visualization of Brown Adipose Tissue, Journal of Nuclear Medicine Vol. 44 No. 9 1421-1425)

But, somehow, even though I found those examples, I spent most of the night awake in tears. I know that if it was anyone's scan but Sydney's that I would identify those spots as disease. I simply can't change the fact that they are there.

I am heartbroken.

Over night I tried to get out all of my tears so that I could be strong for my family today. But even now, I sit barely able to breathe with a lump in my throat and unable to see the screen because of my tears.

Could I be wrong? God, I hope so. I have prayed and prayed. I have sworn off every vice that I have and even promised to start a few more just so that I could swear those off as well. Add on top of that that I only saw the 2D scan and not the 3D version, her spots could be explained away as normal.

I just can't bring myself to get my hopes up. Perhaps, I fear the devastation too much.

Add on top of all of this the fact that we did not hear from Dr. Eames yesterday. Knowing her, she would have called had she had good news. She knows us too well.

Today, at 9:30 AM we have an appointment where we should get the definitive answer. I will be there with Lynley and Sydney and, for those of you that know, I will be wearing a Hawaiian shirt.

God help us. Please spare my purpose.


Anonymous said...

Mark I am praying with all my heart that it is not a relapse. Please don't leave us hanging over the weekend.

Cindy in VA

laulausmamma said...

I feel your fear and heartache Mark...feel the power of prayer and positive vibes being sent your way from all around the country. Please let us know as soon as you can....just a quick note. ((HUGS))

Catherine said...

Sydney and your family have been and will be in my prayers regardless of the result. Those scans are not easy to read even by the most skilled and experienced doctors; they are among the most difficult to interpret in borderline situations. That it did not shout out at you from the onset makes me feel that there is a definite chance that it is not NB.

But even if it is not, it hurts that the equilibrium is so fragile. I still go into panic mode when my 21 year old ALL survivor has any suspicious symptoms which has cost us thousands in immediate plane fare home in the last year alone.

Again, I am hoping very hard that this is not NB showing up on the scan.

Love, hope and prayers

Cath Youn

Unknown said...

Mark and Lynley, I am praying for you and anxiously awaiting to hear the result of this last scan. Each of Sydney's classmates are praying for a miracle for her.

Unknown said...

Please let us know as we are praying for her. God help Sydney and spare her and this family any heartache.

Anonymous said...

As a long time reader of your blog, my prayers are with you and most definitely with Sydney

Jessica said...

I've followed your blog for the past few years, since starting work for a childhood cancer nonprofit -- I used your family's story to help educate myself about the personal side of the new world I was learning about for my new career. I still check your blog every morning when I get to my desk and I feel like I know your family. Although we've never met, I pray for your daughter very often and my prayers have multiplied this week!