We are now into the hardest phase of Noah’s Treatment. He has 4-8 pills to take twice a day. The tears and pleading each time we sit down to take pills is heart wrenching. I can not even begin to explain how this wears on Gina and I. We want to be strong for Noah and try to encourage him as much as we can but we also must be firm as well. We must “Make HIM” take the meds. At first we would crush the meds and mix them in Ice Cream. Then Noah learned to swallow pills but that only lasted a few weeks before we were back to the begging and crying at pill time. Lately we have been crushing up the pills and mixing them into the cream filling from an Oreo cookie. Who knows how long that will last. But he is taking the pills. The Steroid makes him sick but it makes him want to eat. The only problem is he eats like a bird and then 20 minutes later he wants to eat again. My poor wife Gina has been non stop. If she is not cooking something for Noah she is preparing something to eat for him or running somewhere to pick up something he has requested. The photo from this post is Noah having lunch but trying to finish my lunch. We sat down together to eat and he kept saying “That’s good isn’t it dad”? Then he said “If you leave a little in the bottom I will finish it” Of course we desperately want Noah to eat so I gladly offered the remaining lunch to him. He had a few bites of mine and a few bits of his and he was finished. He is sleeping a bunch. He will be active for a few hours and then down for a nap for a few hours. Then sick, Then Hungry, Then eat like a bird and repeat the cycle. He has pills to take at 8am and again at 8pm. 7 days on the steroid and 7 days off. This phase is called “Delayed Intensification” We will be in this phase for 43 days if all goes well. Of course if there are any infections or bad reactions then there will be delays. As a parent this just rips your heart out. Our slogan has been “Fight like NOAH”
Thank you all who take the time to read and pray. As Noah would say “Love you, bye”
