Sunday, November 8, 2009

Chemo, Cancellelations, and Cake!

November 6th, traditionally my birthday, but today we headed off to begin CNS therapy and radiation. Sam and I arrived at Radiology at 7am, Brian dropped Jack off at school and called in to see his class and say hello to friends.

Sam was taken almost immediately to the room for his radiation. He saw the table that he would lie on, the same one he had played with a on Wednesday, raising and lowering Bob, the technician, after having his mask fitted. Things went well until the mask was placed and bolted to the table...Sammy freaked out and I could see why. Although it was a plastic mesh with plenty of holes for breathing, it was so tight and restrictive, I would have panicked too. To make things worse, we had been told he would be in the mask for no more than two minutes, we discovered it would actually be 20 minutes as photographs were needed of his brain. This was too much for him to handle and we had to take the mask back off. After a ten minute break, we tried luck...and I asked if something could be done to ease his a dose of the happy stuff.

The Radiology department contacted the clinic as we were expected up there for Sam's Chemo and lumbar puncture (henceforth referred to as LP). We were met by two doctors from Anesthesiology who had arranged for Sam to be 'out' for the radiation and the LP at the same time. In the meantime, we were to go to the clinic to get the chemo. We quickly visited the 4th floor for the finger prick - glad I thought to numb it just in case - and then waited for the doctor to see us at the clinic. I was pleased to see Dr. Roth.

I have a tendency to look things up on the internet...not on regular, unreliable sites, but I look at actual studies with validity. I usually have many questions after my research and write them all down for the doctors to answer. I do this because I am not usually able to go to the visits and have to rely on Brian relaying my thoughts and concerns. Dr. Roth was polite and responded, but really wanted me to stop looking online and scaring myself. Brian said this too, and I later found out he had spoken to a close family friend who happens to be a doctor at Sloan-Kettering (and a forceful presence when she wants to be), and she blasted me via email for it too! I promised to try my best to stop!

During our doctor consult with Dr. Roth, an emergency occurred in one of the other rooms of the clinic. It was very serious as the whole staff seemed thrown the rest of the day. Remember, these are doctors who deal with childhood cancer, so if they are thrown, it must be bad! I heard Dr. Roth tell everyone to keep the door closed as Sam went through..scary!

A while later, we were ensconced in one of the booths in the clinic. Sam was hooked up...being accessed was painful today, and he was in a bad mood. Brian arrived and we settled into the usual routine of hanging around and waiting for the chemo. Sam was given his chemo; Doxorubicin and Dexrazoxane, into his port. I had been very surprised when I discovered that the Dexrazoxane had only just arrived at the hospital as they had run out! Imagine me putting up the fight of my life had they tried to give the Doxorubicin without it...they were lucky ;)

The IV machine beeped to let us know the doses were complete. We cold now get ready for the radiation and LP. Or not! As the nurse went to unplug Sam's tubing, she noticed he was soaking wet! He was actually covered in all the chemo meds he had been supposedly receiving though the tubes. I kept my cool as I tried to establish,  a) the reason for this, and b) how we would know how much Sam had received and how to work out how much was still needed...I did not want too much or too little being given. Finally the nurse told me she had just not connected the tubing so he would get the full dose again after it had been ordered and delivered from the pharmacy...more waiting...Grrr! Now you see why I like to 'helicopter-mom' everything and do research...mistakes are made all the time.

The day continued with more mistakes: I also noticed our roadmap was wrong.  The roadmap at this point is basically a list of all the meds with days, dates, and amounts in an Excel spreadsheet to help us keep track of when and how much of each med is given. All the dates were mixed was Friday but the day said Tuesday. The doses were also wrong...but the doctor himself caught that...Hmm.  The morning emergency had certainly thrown everyone...I was really on my toes by now.

Then we were canceled! The radiation machine was broken so we put off the radiation start date until the next Monday. To be honest, I was glad and just wanted to get home safely. The way things were going, I was glad Sam was not facing lazer-beams and zapping from a monstrous machine giving doses of radiation into his me protective!

We still had the LP which went to plan. Of course, Brian ran to get something to eat just before they came to get us and missed Sam going under.  But I was really happy to report that Sam walked into the room where he gets put to sleep, playing and joking with the doctors and anesthesiologists. They loved how he was so eager to go to sleep, and he announced it was so much better than knowing what was going on. Dr. Levy was there to perform the LP and he couldn't believe how far Sam had come.

After a full day of mishaps, I was relieved to spend the evening celebrating with my boys. Nana and Poppa brought Jack up from school about 5:30 and we gathered to open cards and prezzies...lovely! Then Brian, Jack, Sam and I ate pizza, (what else!?!?) and they sang Happy Birthday as I blew out the candles on my yummy ice cream cake :)

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