The last few weeks have been rough. Nevan's reaction to his Dex is getting worse and worse. He is having a much harder time controlling his feelings and reacts very harshly to so many things including his little sister... poor thing. A few weeks ago, Nevan's secretary called me from his school and told me she had Nevan there with her and he was having chest pains. We dropped what we were doing, picked him up and spent the next 6 hours in the McMaster emergency room. They put Nevan through a bunch of tests, but could not diagnose anything... which in this case wasn't a bad thing. With Leukemia there is a very real chance Nevan will have heart problems in the future and these tests came back clear! Phew! The only other thing it may be was severe Acid Reflux... so more meds were prescribed.
Since then, Nevan has been feeling ok... we reached a mile stone this past week when Nevan had his LAST sedated Lumbar Puncture (chemo in his spine). That morning however he woke up and we noticed a fair number of bruises on his lower body. We spoke to the Nurses at clinic and they didn't seem overly concerned except to say "don't let him get bumped too badly". Ok... no problem... we have managed it for almost 2 years now. Fast forward 8 hours and Nevan is lying on the ground screaming as he falls off his bike! ugh! I told Nevan before he left that since he was sedated in the morning, we were not going to bring his bike to his school BBQ as he is still a bit dizzy. He agreed, but seeing all his friends riding around and having just missed 1 month of school because of a chicken pox outbreak... Nevan broke down and begged to join his friends. Daddy went to get his bike so he could ride in the last 5 minutes of the relay... it took only 2 and he was down. He cut his right hand open and got road rash on his elbow, shoulder blade and stomach. We took him home as fast as we could and I put him in the tub to wash as much of the dirt and gravel out as I could. Nevan has been and probably always will be physically and emotionally against anything sticky touching his skin. No bandages are allowed to come near him at any time unless absolutely necessary. The only other alternative, wrap him in tensor bandages and gauze! So that's what we did. He looked like he just had major surgery, but he was happy and went to bed utterly exhausted!
The next morning, Nevan felt a bit better physically but mentally, his dex was taking control. Nylah ended up touching the wrong lego piece and Nevan decided to gouge out her arm with the corner of the piece!! Nylah started screaming and Nevan was just angry... there was no remorse, just outright anger at the situation. I couldn't believe it... it was like Nevan was gone. My Nevan... the healthy one... the one that doesn't suffer from 'roid rage would NEVER have even thought to harm his sister. It was very upsetting for all of us.
Nevan is losing weight and doesn't have as much energy as he used to. He suffers with undiagnosed abdominal pain, diarrhea and fatigue. We are very lucky that he has tolerated it this well so far, but as our dreams of living a cancer free life are getting closer and closer to reality... it seems our momentum is wavering. 2015 cannot get here fast enough... we will welcome it with open arms!!
Cute story of the day:
When ever Nevan goes to school, I have my phone inches away from me at all times just incase I see Saginaw PS call through. It usually means something is wrong and I need to go and pick him up.
Last week the phone rings, I answer and there is a little voice on the other end.
"Hi Mommy, I just wanted to tell you that I am going to be dancing with Daniel and Ben in the talent show next week"
Me: "ummm ok... are you feeling ok?"
Nevan: "Yes"
Me: "Don't you have class right now?"
Nevan: "Yes"
Me: "Shouldn't you be there?"
Nevan: "Yes"
Me: "Nevan are you really not understanding what I am trying to get at here?"
Nevan: "Yes, I understand... bye Mommy!"
The Next Day the phone rings again:
"Hi Mommy"
Me: "Hi Nevan, Whats wrong"
Nevan: "Can you bring me some Cheesies?"
..... I don't think he understood! :)
