Wednesday, January 9, 2013

Collin has had two of his three therapy evals so far this week. Monday we saw his physical therapist. She will see him once a week to work on strengthening and balance; some things we need to work on at home include having him stand and walk on his knees, and catch and kick a ball without losing his balance. Today we had occupational therapy. He will also be getting OT once a week, to also work on strengthening and coordination. We will see his speech therapist Friday. I've also been working on patching Collin's left eye, and got him up to an hour yesterday. Our goal is two hours a day.

Today we saw a pediatric endocrinologist due to the low Cortisol level found last week. Collin has hypopituitarism; basically the radiation has damaged his pituitary gland, which in turn is not controling the thyroid and adrenal glands properly. Cortisol is produced by the adrenal glands, and controls blood pressure and blood sugar, helps the immune system, and is released as part of the body's response to stress. When Collin has anesthesia tomorrow for his MRI, he will receive a "stress dose" of hydrocortisone to prevent an adrenal crisis, which can be life threatening. The endocrinologist ordered fasting bloodwork to be done early tomorrow morning before his MRI; she is checking his thyroid, cortisol levels, etc. She suspects the labwork to show he has hypothyroidism as well. If this is the case, he will need to take medication three times a day...for the rest of his life. A few years down the road, he will also need daily injections of growth hormone. None of this really comes as a surprise; I knew this was likely because of the radiation. I'm just a bit surprised that it has shown up so soon, but Collin's oncologist said this is not uncommon.

The morning after Christmas, Neya woke up at 2 am with severe ear pain, so the next day I took her to our pediatrician. As I suspected, she had an ear infection. While we were there, I mentioned that Neya has complained to me a few times about a rapid heartbeat and pain in her chest. So, the doctor ordered bloodwork and an EKG. Yesterday we met with the pediatrician to discuss the results. All of her bloodwork was fine. Her EKG showed a normal sinus rhythm, but also showed a "mild right ventricular conduction delay". Our pediatrician doesn't think it's anything serious, but since it's not something he would have expected, he has referred Neya to a pediatric cardiologist for a cardiac workup. Her appointment will be next Tuesday.

Tomorrow will be a long, stressful day. We'll be at clinic at 8 am for labwork, and the MRI is scheduled for 11. Hopefully we will be able to get a preliminary read tomorrow. My anxiety over scan results has reached a new level now that Collin has had radiation. Before, I always knew that we still had radiation to try, which was some reassurance. It was his best chance at a "cure". Now that we've done radiation, I know there is not a lot left to try if he relapses again. It's a terrifying thought. There is nothing in the world I want more than to see my sweet boy grow up.