Over the past 2 years, while Matt has been stable, I think I've sort of forgotten (blocked???) the roller coaster otherwise called 'I have a child with cancer'. The highs are higher than you can imagine (Stable! Shrinkage! Miracles!!) but the lows are oh so low. It is a weird feeling, this euphoria mixed with utter despair, and it can change in a day, an hour, an instant.
Thus, my happy go lucky post of a few days ago is now completely different. I mentioned his feet in my last post and that was the beginning of a quick ride downhill. He had the u/s and such to rule out clots, but then he began feeling poorly. We can't quite put a finger on what is going on. Every test that is run is negative, but he has been extremely lethargic, has no appetite, has a severe headache, stuffy nose, congestion, and just generally feels crummy. When I say he has been lethargic, he's been really tired. He slept much of the day on Saturday and over 8 hours on Monday. :(
So, after having a crummy day Saturday and when he woke up Sunday still feeling really bad, we decided to take him into PCMC and have him seen. In triage, he freaked everyone out. His breathing was labored and fast, his color was bad, and just hearing Matt's history makes every doctor worth their stethoscope panic. They ran labs (all fine) and gave him fluids. By the time we had been there for 4ish hours, Matt was looking a bit better. They were going to admit him to the hospital 'for observation', but I talked them out of it. :) I would do anything if Matt needed it, but with all the tests coming back negative, and a holiday weekend that assured me nothing would really get done before Tuesday, it seemed that Matt would sleep better in his own bed. I promised to watch him carefully, bring him back if I was worried again, and follow up this week.
Then he slept ALL DAY on Monday.
I hoped that he would perk up a bit once he woke up, but on Tuesday he was feeling even worse. I quickly got ready, called both PCMC and St.Jude, dropped off my little ones with my sister-in-law and headed to PCMC. Once there, Matt again succeeded in freaking everyone out. I wheeled him into oncology in tears because he was in so much pain. When the NP and nurses came in he was lying on the bed in the fetal position looking about as miserable as I've ever seen him.
Then, he started to perk up a little bit. Of course, the doctor came in after a little while and Matt was looking much much much better. I was actually happy the nurses and NP had seen him so miserable - otherwise I would feel like I was crazy!
Anyhow, long story short (even though this isn't short. Ha!) they ran many many tests, gave him fluids, IV narcotics for the pain and we came home. We go back tomorrow for an MRI to make sure this headache isn't tumor related.
And this pretty much sums up why having a kid with cancer is so difficult. You have to learn to think backwards. If any of my other kids are having pain in their leg, I'll help them soak it in a bath, take Tylenol, rest it, etc.... If Matt has pain in his leg, we rush into the ER for u/s and specialized tests to rule out clots or something else, then, if everything looks okay, I help him soak it in a bath and give him Tylenol. :)
If my other kids get a virus, I'll put them to bed without a second thought. I make sure they have a puke bucket, that their fever doesn't get too high, and that they are comfortable and feel loved. If Matt gets a virus, we spend the next 3 days in the ER, increase some of his medications, run every test under the sun, and do an emergency MRI to rule out something in the brain causing the symptoms.
I'm trying to have faith that this is just a virus that is kicking his butt.
But I'm terrified that it's not!
So, if you are so inclined, we would very much appreciate some prayers on his behalf. Prayers that this is just a virus, that his scans will still look good tomorrow, and, mostly, that he can begin feeling better!