Thursday, December 16, 2010

A trip through the mind of a basket case

For me, this week has been a downhill slide. I keep grabbing the sides to slow down but my mind just won't stop going there. I have that all to familiar uneasiness where my heart is lodged in my throat. In my moments alone, there is a whirlwind of thoughts swirling through my brain and it almost always leaves me on the brink of tears. It does not take long to take a relatively stable man and turn him into a puddle of complete and utter mess.

Here I sit at 4:00 AM, some 4 hours before Sydney's MIBG scan. In fact, I am writing these words and will probably have realized our future well before anyone reads them. Somehow though, it still makes me feel better to sit here and write.

This scan has me the most terrified. To me it is this scan that is probably the true test as to whether Sydney has relapsed. The thought that in just 4 hours I will have a good idea of Sydney's future - whether she will live or not - is just surreal. I don't really know how to explain it and I don't know that I would want to.

All night long my mind has relived what today's scan might be like. Could I bring myself to watch the monitors? Do I just want to wait to hear the results from Dr. Eames tomorrow? If the scan goes bad, how would I explain this all to Sydney? What about Graham and Ainsley? How do I keep it together?

I tell you, I am mental. This little episode has brought me to my knees. Oh sure, I have been there and seen it 1000 times. I know how this all goes. But still, when it is your child, it is an entirely different story. It looks different, smells different, and feels different.

I am scared out of my wits. You can't see it, not even when we are standing face to face, but I am trembling with fear. The two Mark's (hopefully temporarily) are back.

So, why all of the fear? What does today mean?

The good news is that the results of this scan have played out in my mind so many times that I have considered just about every possibility. So, for those of you new to this, the MIBG (metaiodobenzylguanidine - and no, I (unfortunately) did not have to look that up) scan is a specialized scan, primarily used for children with neuroblastoma. MIBG is sucked up by about 90% of neuroblastoma tumors. In essence, they stick some radiation onto the MIBG particles and then inject them into the kids. Assuming there is neuroblastoma, the MIBG will congregate where the neuroblastoma cells are and then show up on the scan as a hot spot. If there is no neuroblastoma, the radiation will highlight the thyroid and some of the organs as it passes through the system on the way out but, other than that, it pretty much just passes through and disappears.

For Sydney, this scan is not definitive because we do not know for sure whether she is MIBG avid. I.e. we don't know any longer whether she is in the 90% group or the 10% group. We know that if that scan is positive there is a 99% chance she has relapsed neuroblastoma. However, if the scan is negative we can feel better about it but we still do not know for sure that she does not have neuroblastoma. She could be in that 10% of neuroblastomas whose disease just doesn't take up the MIBG. I make this distinction because it is a significant concern for her. You may remember that at her first "relapse" (if that is what it was) she was not MIBG avid even though she had been avid at her original diagnosis.

So, here is the rub. Over time I have become to believe that Sydney probably did not relapse. I am not alone in that revelation and can probably point you to about 50 neuroblastoma experts that feel the same way now. So, in my mind, she is still likely to be MIBG avid. Given that, if that spot on her breast plate is neuroblastoma, I will see it light up this morning.

I will be real honest with you. I am a big strong man, but I don't know if I could handle it. I will be there. I will be solid for my family. But jeez, I just don't know how I could possibly keep in together.

Back to rational, Mark.

So, anyway, today's scan is no fun. While we could discover that Sydney has relapsed neuroblastoma, on the other side of the coin, it does not provide us any guarantee that she doesn't. Don't get me wrong, though. I would give anything for a negative scan.

Take it all, just spare me my family.

So, here I sit. Ever the basket case, still hoping and praying for a clean scan - slowly watching the time tick away on the clock. In 3 hours an 42 minutes I will know. Is that when our lives will crumble?

Tick. Tick. Tick.

Praying for a clean scan.

God, I have purpose, give me strength.


Anonymous said...

Praying for good scans today and for you and Lynley and the rest of the family.

Gay May

Our Rhabdomyosarcoma Journey said...

I have been reading your page for a while mainly because we also were treated at cooks, but for rhabdomyosarcoma.

Man I hate hate hate scans. Our 9 month off treatment are Friday and your post explains my fear perfectly. Many prayers and hopes for scan scans and also clear results,

Anonymous said...

I've been reading Sydney's story since almost day one. I read a brief article in a Ladie's magazine about6-7 years ago. Touched my heart. I just said a prayer for clean scans and above all for your family to trust in God.

Anonymous said...

I know that scanxiety can be terrible. I pray that Sydney's scans are CLEAN!!!

"Have you heard about Cole's Foundation? We have a prayer team that prays for families who are affected by pediatric cancer and other childhood illnesses. You can visit to read about sweet Cole and his family's mission and, if you'd like, you can also register your family from the homepage and it only takes a few minutes."

♥♥ Love in Christ!! ♥♥
C.O.L.E.'s Foundation (Caring Openly, Loving Eternally)
Sandy Daron