Intensification Treatment 3: PEG re-challenge

After a very rocky start to intensification, we were very pleased with the outcome of Friday. To say we were scared to re-challenge this drug would be an understatement. Cooper was scared too and mentioned that he was afraid to go back to the hospital because he didn't want to stop breathing. That's some heavy stuff to work through with everything else he had going on.

Cooper with his amazing Child Life Specialist walking him through everything. She helps a great deal with things that cause Cooper to feel afraid or anxious. He definitely wasn't thrilled about Friday after all of the action on Wednesday. He told her that he "wasn't very happy to be at the hospital today and that he brought his "stank face" with him."

 Cooper with his gourmet meal of broiled salmon and rice...good grief! Chemo significantly changes your taste buds and now all our 5 year old will eat is brie, salmon, rice, and crab cakes!

 Movie time! One can only play so many games and read so much Harry Potter while sitting in a hospital bed for hours.

On Friday he received 3 different chemo drugs so we were at the hospital for about 12 hours. They did some additional blood testing after Wednesday to look at some of his cells to determine the kind of reaction that he had. This would determine how safe it was to rechallege the drug. If the drug gets aborted entirely, he would have to do an alternative drug where he would have 8 treatments every other day. Not ideal. Fortunately, they determined that the reaction was not anaphylactic but infusional, making it more safe to retry. They premeditated with a laundry list of meds and also Coop was the first kiddo at Hopkins to try out a newer protocol from Children's in Philadelphia where they dilute the drug and infuse it with saline the reduce reaction. So we are DONE with the PEG drug! We are back on Friday for 2 more chemos, another round of steroids for the week, and we get to knock this other one that makes him really nauseous off the list too. This will complete the treatments for the first half of intensification. They will do a lab check in between as they expect his blood counts to drop. They will give him about a week to recover before they start the last half of phase 4.

Feeling pretty good after a 3 chemo day!

Cooper had no issues and made it through with flying colors. He also had only a little bit of nausea this time, which was all positive. We are learning slowly but surely what his triggers are and how to stay on top of things. It is definitely a process. Cooper even felt good enough to go outside a little bit. We are certainly going stir crazy but we are feeling good about our upswing for know...knowing that things in our life can turn on a dime. Cooper in unbelievable. He amazes us everyday with his ability to roll with his situation. We are so proud of him!