Today was the day Caleb got his port put in.  Placing it is a surgical procedure, and even though it is very routine here, I was still nervous for Caleb. He couldn’t eat anything when he woke up, which he is getting pretty used to.  So we just play and I try to keep his mind off things. As surgery time got closer I was getting more and more nervous for him.  But he was just fine and I’m so proud of him for being brave.


We got dressed up in our outfits to go into the O.R. and of course Caleb thought it was hilarious that I had to get dressed up too. This definitely distracted from what was about to happen. The one thing he doesn’t like is the anesthesia mask, because he knows that is going to put him to sleep. So I held his hand and he cried a little and then was asleep. And then I cried a little and then I left the O.R.

The doctors and nurses are all so amazing and told me they would take great care of him in there.  And I knew they would because they always do, and I am so grateful for every amazing person here that will do any song and dance and go to any length to make Caleb feel comfortable.  There are so many times that a procedure or appointment takes much longer than it probably would for an adult, because the doctors never rush. They take time to explain things at the child’s level, bring them toys or play doh, or let them play with the tools they are using in the room.

So the port, even though it required surgery, is a very good thing. He can now receive medicine, they can draw blood, and eventually he’ll receive his chemotherapy drugs all through this port. It does many things, but the best part is he’ll only have to get one stick a week when they access the port, and he won’t have to get a needle stick every time they need to do an IV, or draw blood, etc.

After his surgery James and I met with a Research Nurse. We had inquired about a test that is not standard, but that they are developing, called a MetPet. They do not do regular PET scans on brain tumor patients, because it does not give them much information.  The dye they use doesn’t give them enough contrast in the brain to really tell them what is going on. So this newer test (it’s been around 10 years, so not that new) uses an amino acid dye that will show them a lot more of what is going on in the brain.  So, although it isn’t required and isn’t necessarily standard protocol, we opted into this research study for the MetPet scan.  He will have 3 of those scans over the course of his time here. This will show them more than the MRI can see, so I’m nervous and anxious to find out the results and see if they can see any more tumor growth anywhere. This test will happen around noon tomorrow.

So, my little man is currently resting comfortable with a pepsi, his pringles, and his iPad. He has had only a little discomfort which we are treating with Tylenol. He is so brave and wasn’t afraid even when he saw what is on his chest so I am so proud of him!  We are going to take it easy tonight because it’s been a long day!

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