Days +306 to +312: Losing Sight of the Light

What we feared might happen has happened. Ezra's counts dropped this week. In particular, his hemoglobin is lower than it has been since the end of March when we were first discharged and one measure of red blood cell destruction is higher than it's been in almost two months. His platelets also dropped, although they are still at a very good, safe number. Although the timing of this drop in counts coincides with the outbreak of the rhinovirus, it is impossible to know if the drop is being caused solely by the virus, or by the steroid decrease, or both. Whatever the answer is, the drop is significant and the doctors feel something has to be done. 

Here is the plan. We went to a higher steroid dose Friday and are staying at that dose until at least tomorrow. We are going back to Sloan tomorrow for a counts check and, unfortunately, high dose IVIG. The reasons for the high dose IVIG are 1) his IgG dropped to just above the threshold for giving it (which may or may not be a consequence of fighting off the infection); 2) if the platelet decrease is from auto-antibodies, then the high dose IVIG will help stop any further destruction; and 3) it will hopefully completely knock the rhinovirus out of his system and we can take it out of the picture. Thankfully, he has been doing a good job of getting rid of the rhinovirus on his own. He still has a bit of a stuffy nose, but the virus is on its way out. The high dose IVIG should help ensure that it's gone. 

The next step with the steroids will be determined by his counts tomorrow. If they bounce back, then we should be able to drop down to a lower dose, but the doctor is already talking about keeping him at a higher dose than what he was taking for a longer period of time. How long is unclear. Our first question was "then how is he ever going to get T cells?" Well, there was no easy answer to that question. 

We know that it is too soon to feel defeated. If his counts bounce back quickly and stabilize, then the doctors may draw the conclusion that it was the virus causing the counts suppression and he may be able to go back down on steroids quickly. Whatever the outcome, it's hard not to feel heartbroken over another setback. It feels like it never ends - every time we start to feel optimistic, we fall backward. Once again, we thought we were seeing the glimmer of light at the end of the tunnel. And once again, we've lost sight of that light. 

Despite the craziness going on inside his body, Ezra feels well and isn't too bothered by the sniffles. His teachers and therapists are on break for the next week, and then he will continue to receive services during the summer. Ezra has missed so much time that it's great that we don't have to stop again for the summer. His days would be very empty without his teachers to fill them with learning, challenges, and fun. We are trying to keep him busy during break - like spending the afternoon watching PSE&G work on a gas pipe down the road. Thank you to the PSE&G workers for answering Ezra's many questions and for kindly offering for him to climb into the machinery (which he thankfully declined)!

For now, we tuck away our dreams of school and play dates for some other time. We will continue to do what we have learned to do best - find the light in our sanitized world of Purell and Clorox wipes and keep the rest of life at bay for a future day we still hope will come.