Fun while it lasted...

So our respite was short-lived.  Emmett woke up with a fever this morning and they had us bring him in.  One of the side effects of chemotherapy is that your blood counts get really low (specifically white blood cells, red blood cells, and platelets).  While his blood counts are low, he essentially has no defenses against bacterial and other infections.  If an infection goes unchecked, his condition can get serious very quickly.  For this reason, as soon as he gets a fever they want him in the hospital so they can look for an infection, start him on antibiotics, and monitor his condition.  Sometimes they find an infection, but more often there's no apparent cause for the fever.  However, they keep him in the hospital on antibiotics "just in case" until his condition improves.  When his blood counts start going back up, he'll start feeling better and they'll let us go home.  What we've gathered from the conversations today is that the time frame for release can be anywhere from a couple of days to a couple of weeks.

It's sad that Emmett will experience more misery stuck in the hospital in the coming days...and weeks...and months.  The good news, as Dr. Mark Kieran put it today, is the fact that we're in the hospital a lot means that we're hitting the tumor hard - and that's exactly what it needs and deserves.

We've continued to see miracles and blessings which have strengthened and encouraged us over the past few weeks.  It was a miracle that Emmett's flow study showed normal cerebrospinal fluid flow which allowed the doctors to start intrathecal chemotherapy to treat the cells that have made their way into his spinal column/brain.  With two spinal surgeries in the last month, the doctors expected his flow may have been disrupted due to scar tissue and inflammation.  It's a miracle that Emmett has regained some use of his left arm.  As our families have continued to research ATRT, the word continues to come back from members of the medical community that two specific doctors, Susan Chi and Mark Kieran, are premier physicians in treating this particular cancer.  We feel very fortunate to have them as our attending physicians. What are the chances of them working at a hospital within 30 minutes of Katy's parents?  There's no question the Lord has prepared the way before us for Emmett's treatment.

We count it a great blessing that I'm able to work remotely during this difficult time.  Many jobs don't have that flexibility, and I can't imagine how hard it would be to watch from New Mexico as Emmett starts treatment.  Additionally, a couple we met tonight showed us where you can sometimes find a room to stay in the hospital for days when Emmett's room only allows one parent to sleep over.  That prevents one of us from having to make the trek to the Ronald McDonald each night, and we consider that a blessing.  We also enjoyed the messages of General Conference two weeks ago when modern-day prophets shared messages to strengthen us in our trials and tribulations.  Never have more conference talks applied directly to us - it's like several of the speakers knew our story and wrote a talk especially for us.  Katy and I especially enjoyed the talks by Neil L. Andersen, Russell M. Nelson, Ronald A. Rasband, and Henry B. Eyring.  In reviewing these messages we've been blessed with an increased measure of peace and comfort to during this difficult time.  I know we'll reflect on them often during the coming months.

So one fun tidbit - I walked into our room tonight with a Dumdum sucker in my mouth.  Emmett was pretty wiped out from drugs, fever and exhaustion, but he opened his eyes slightly, saw my sucker, outstretched his hand, and whimpered until I gave it to him.  Then he held it against his chest and went back to sleep before even tasting it (holding candy in his hand but never eating it is his latest thing).  Well, luckily I'd come prepared with a backup sucker.  Five minutes later, Emmett wakes up again, insists on me giving him my second sucker, and then goes back to sleep.  Two hours later I'm startled by Emmett shrieking in his crib and I jump to to find out what's causing him pain.  What do I find?  One of the half-eaten suckers has adhered to the bed sheet and Emmett can't get it off.  After I helped him pull it off, he stops crying, holds it to his chest, and again goes to sleep!