August 15, 2013

My cancer anxiety is in full swing.  We are one week overdue for scans and my mind is racing.  Dr. Kushner talked with the docs here and said it would be fine to wait until he got his halo off before we did the scans, but as the parent that waiting is not so easy.  There is a certain amount of pain that comes with the waiting and the uncertainty; especially given what we are doing.  It was an enormously tough decision for George and I to make to bring Clayton here to correct his back while he was NED and still at such a great risk of relapse.  The idea that he could relapse a month from now or even now and we have spent some of his healthy days in a hospital has weighed heavily on us.  I knew though that if he ever did relapse he was going to need every respiratory advantage he could get, which meant a straight back.  So here we are...waiting to do scans almost a month late and about to go through what is likely Clayton's toughest surgery yet.  It's funny too, I did not realize how much I was going to miss MSKCC until having to seriously consider doing these scans somewhere else.  I'm fine with doing the CT and MRI here because we're comfortable here, but I hate the idea of taking him to a hospital/oncology team we're not familiar with to do the MIBG and bone marrows.  It's so nice because at MSKCC we know every doctor, most nurses, all of the recovery nurses, the anesthesiologist,  most everyone.  And they know Clayton.  At least we will definitely be seeing them for our next scans...

I feel as though I am surrounded by fear.  On the one side I have cancer and on the other side I have an incredibly risky spinal surgery.  This surgery that is only 12 days away will be Clayton's 15th operation and his 3rd major operation.  Did you catch that? He is not yet 5 and this will be his 15th procedure.  

Skipping around, this week has been a busy week at the hospital.  One of our buddies had his major surgery Tuesday, another got her halo vest off today, another had his major surgery today and another has her major surgery tomorrow.  That's the most action our little group of patients has seen around here amongst themselves.  We've spent all of this time watching others come and go and now our names are being called one by one.  It's scary even when it's not your child because you spend so much time with these children and their families.  And you know that the day will come when you are left waiting for what feels like dusk until dawn for your child to come out of surgery.  It is one of the most anxiety riddled experiences that is then followed by some of the hardest days ever.  They usually let them sleep the first day (which is when you also have to keep a close eye on respiratory after such a long surgery) and day two they make them sit up for an hour.  Day three they have to start walking.  I've been told by another mother that days 2-5 are miserable and day 6 is the magic day.  We'll see...

Oh and to make worries worse I found out my favorite cancer buddy,Justin, who relapsed for the 6th time and was declared NED in early July has just had his 7th relapse confirmed after being NED for just 4 weeks.  His body is weak and the cancer is progressing, so his only option is to go home, do some chemo, pray his cancer will be stable and then maybe he can be eligible for a study or trial somewhere.

Sorry about my skipping around with all of my random ramblings...if you could only see how these things go through my head...