Let me preface this by saying that I don't know why (unless I'm just a slow learner), but each time we start a new cycle I truly believe deep down that it will be our best cycle yet and that we will get through it without incident. Even when the rational side of me knows that Day 12 is infamous for crashes, I'm still surprised when Ethan and I find ourselves sleeping in the hospital that night...
Lately Ethan has been waking up with a high fever on Day 12 and I've always wondered (and worried) how long he may have had it before we caught it. Thursday night, Bert and I talked about the impending Day 12 and I confess to sleeping with him so that I could check him throughout the night. He did fantastic and then played actively the following morning. By 11:30 am Ethan, Kyra and I all curled up to drink some milk and Ethan suddenly curled into a ball and asked me to get him a blanket. When I brought one back his whole body was shaking and he developed a fever shortly after. He was rapidly admitted to the hospital where his doctors began administering Rocephin and Vancomycin antibiotics. His fever lasted about 4 hours and topped out at 102.7. He also began to have some problems with vomiting.
Around 10:00 pm, his body started shaking again so we took his temperature and it
was normal. We gave him Tylenol as a precaution and within minutes his temperature was 101.5. An hour after the Tylenol his temperature climbed to 102.9 so we packed his body in ice and I started using ice-cold washcloths on his forehead every few minutes. Half an hour later, while both medicated and packed in ice, his temperature went to 103.9 where it stayed a while before starting on its way down. This episode lasted about 3 nerve-racking hours. It was very concerning to see that he wasn't responding to any of the antibiotics or to the Tylenol. He also had too few platelets to administer ibuprofen for the fever. The Resident on duty called his Oncologist who got word from the lab that his blood cultures was growing some sort of Gram-negative rod bacteria. We switched out the Vancomycin for Imipenem and hoped for better results.Ethan seemed to bounce back well the next morning and was his normal self, but around 11:00 am (as we were beginning a platelet transfusion) his body started shaking again. Knowing what happened the night before we immediately gave him Tylenol and packed his body in ice. It took less then an hour for his temperature to go from normal to an astonishing 105.9 - UNDER HIS ARM. He was shaking uncontrollably and vomiting a lot. It seemed like we just couldn't get control of the situation. He was a mess and so was I just watching. I tried hard to stay calm, but I had tears rolling down my face as I watched the nurses hook him up to all of the monitors, call for a cooling blanket, and begin bringing in the crash cart they'd need if he began to go into shock. In between it all, I was frantically trying to call my family and tell them what was happening. I was alone and more scared then I've ever been. It was about 4 hours before he temperature returned to normal and he bounced back. In fact, he felt so good he really wanted to color Easter eggs - so we did. He even said later that night that "This is the best day of my life because its Easter egg coloring day!".
Wow. I had just been thinking that it was most definitely one of my WORST... To be 4 again and bounce back so quickly and completely... Its just amazing.
We also switched antibiotics again, from Rocephin to Tobramycin.
Ethan slept well last night and then woke up sick at 5:30 this morning. Within 15 minutes, his body started shaking so we jumped on to our usual tactics. This morning's episode was short and much less severe, so we believed that the antibiotics were at least putting a dent in this bug. By 6:30 he was already sitting up talking and noticing the Easter eggs that were hidden in his room. He felt good enough to get up and look through his Easter basket and hunt for all the eggs - and was all done by 7:00 and ready for breakfast. He's still not keeping much food down, but he keeps trying - bless his heart.
Later this morning, we got word from his Oncologist that he's got a very nasty bacterial infection called Pseudomonas Aeruginosa. It’s known for being very destructive and very adaptable to its environment - making it very resistant to antibiotics. We've again swapped the Imipenem antibiotic and he is now getting Cipro (remember this from the Anthrax scare?) and still Tobramycin. His Doctors refer to all of these antibiotics as their 'big guns' that are not without their own toxicity and complications. This is a very dangerous infection, but his Doctors are optimistic that they can control it. They've also forewarned us that most kids lose their central lines to pseudomonas infections so we're mentally preparing for that possibility.
I expect that we will have a longer hospital stay than we've become accustomed to, but a lot depends on how quickly we can gain control of this thing. Infections are wild cards, so please keep Ethan in your thoughts and prayers for the foreseeable future. We'll send another update when we have any new information.
Warm Regards,
Kim.