I ended the last post with fingers crossed to be discharged from hospital last Sunday. Sadly, we were not. Eric was coughing so badly Sunday morning that they started him on a Ventolin inhaler. His lungs were tight and the doctor kept coming back to listen to his lungs, plus his nurse was listening to his lungs every time he had the Ventolin inhaler. He was counting, like, this is the 8th time someone has listened to my lungs this morning. Luckily, the Ventolin worked and his lungs sounded better and he stopped coughing for quite a few hours. He did need a bit more Ventolin before bed and they wanted to keep the O2 monitor on him all night. He's usually pretty annoyed with the leads, but handled it well and only de-sat'd one time at 3am. He didn't even wake up, but I sure did. That alarm is loud!
Additionally, over the weekend Eric's blast count started to rise again and by Sunday was up substantially. It was down on Friday which was only 5 days from the end of the last IV chemo so we assumed that it would continue to drop for another couple of days, but it did the opposite. I told the doctor Sunday morning that I was really concerned with the blast count and she suggested waiting until Eric's Oncologist was in the following day. I didn't like waiting, but also didn't want to do anything without the involvement of Eric's Oncologist because he's always got a bunch of plans brewing in his head.
Monday morning Eric's Oncologist comes in the room and he says: this is what's happening and this is how we're going to fix it. I felt instantly better. I knew he would have a plan, but actually seeing and hearing it from him was such a relief.
He doesn't believe that Eric is ill. Given the negative swab and cultures, the fever, coughing and what is happening with his white blood cells, he believes it is Differentiation Syndrome. This is a potentially life threatening side effect of the treatment that Eric started 2 months ago. The medication is causing the blast cells to differentiate into normal white cells, which is a good thing. Unfortunately, this can cause excess fluid build up around the lungs and heart. The Oncologist has ordered a twice daily steroid to treat the lungs and another round of IV chemo to treat the climbing blast cells. Meanwhile the oral treatment that he started 2 months ago that is causing all this continues and the oral treatment that he's been on for years continues at an increased dose. We are expected to stay at the hospital until Friday for the 5 days of IV chemo and for the lung symptoms to resolve. Eric also had an echo and his heart is clear of fluid, so at least that is good news.
Despite the negative swab and cultures, and the diagnosis of Differentiation Syndrome, we are on contact precautions (isolation). It's super frustrating but we know they have to keep the other immune compromised kids here safe. This means I somehow have to entertain Eric all week in this one room. Thankfully we had this awesome Lego set waiting for just such an occasion. Thank you Baker Drive!
The week passed with Lego and movies, in between rest, since Eric isn't feeling well. The cough is annoying and hurts. The steroids make him moody. The chemo upsets his tummy. Daddy came in Tuesday night and spent Canada Day with Eric while Mama went home to see Joel and Millie, do laundry and make some food to bring back to the hospital. Eric wasn't feeling great Tuesday night and he really didn't want me to leave. It was very, very hard to actually walk away that night and take a break for myself.
Thursday we saw the same T8 inpatient doctor (pediatrician) we've been seeing all week. She confirmed she knew the plan - get out Friday so Eric has a day to rest before going to Camp Goodtimes on Sunday. This was a plan that his Onc was on board with and hoping to achieve when we saw him Monday. Mid-week the blast count dropped a little which was good. It indicated the increased treatment was starting to work and hopefully as the week and treatment progressed, the blast count would continue dropping. Unfortunately, on Friday the blast count jumped back up above 10. Additionally his white blood cell count is continuing to skyrocket. I was really concerned about what that might mean, but had no idea until we saw the doctor since this is not a position we've been in before. An Oncologist who works closely with Eric's Oncologist stopped by to let me know that they were going to start another medication that is designed to lower white blood cell counts. It is another oral chemo and they need to monitor to see how he tolerates it, as well as, make sure the cells don't cause other issues as they break down. This meant we weren't going home on Friday as we had planned and when I told Eric he had an absolutely epic - and completely valid - temper tantrum. We had already spent 7 nights in the hospital and believed we were going home that day and there hadn't been any indication before that moment that we might have to stay. Eric also doesn't understand why his white blood cells increasing is a bad thing. When his counts are low, we always want his white blood cells to increase so he can fight infection. He didn't know before that they could rise too much.
Next Eric's Oncologist came by, but Eric was still screaming so I went out in the hall to talk to him. He didn't believe Eric would be safe for camp on Sunday. He thought that maybe he could go Monday or Tuesday but camp only runs until Friday and Eric would have to come back for a count check mid week. Alternately, he'd already talked to the Medical Director for the Camp and they had space to accept both boys for Kids Camp 2, instead of Kids Camp 1. This seemed like a better alternative for Eric to have a safe, fun and full camp experience, but was still heartbreaking. I had to go back and tell Eric, who was still crying, that I had more bad news. One of the Child Life Specialists came by and offered to get us Starbucks to cheer us up and she gave me a hug since I was also crying at this point. She also left Eric a list of Lego from an order that had just arrived, so he could choose one. Believe it or not, he was still way too upset to even be distracted by Lego. It took 3 hours, and a lot of cuddles, but eventually he came around and chose a Lego set.
Eric's team has done everything they can in the past to make fun things happen for Eric so I know it really isn't possible right now. Even Eric had said on Thursday that he was worried he wouldn't pass the swim test (to swim without a lifejacket) even though he's an amazing swimmer, because of the cough. However, logic was not a factor on Friday and Eric said if he couldn't go to Camp 1, he wasn't going at all. Of course I ignored this and accepted Camp 2 for both boys and cancelled the campsite that I had booked at Rolley Lake for our family for that week.
Saturday morning the Child Life Specialist was still trying to cheer Eric up and she brought a waffle iron, dry mix, milk and eggs to our room so Eric could make waffles with her.
Later on Saturday Daddy and Joel came to visit. Granny had given Eric a Pokémon Battle Deck earlier in the week and Eric was itching to try it out so Joel brought the board game from home and his own battle deck. Chuck brought Subway so we had a family picnic in our hospital room and then the boys battled. They each won one game and everyone left happy.
Unfortunately the day was downhill from there. A port can only be accessed for a week at a time, before the needle has to be changed. Technically Eric's should have been done Friday, but that was just not a good day. So his port was de-accessed Saturday afternoon. His chest got a bit of a chance to breathe and he had an opportunity to have a good scrub in the tub. I had asked Eric's nurse in the morning if she had a lot of experience with ports (because she is new to me) and she said that she did. It was actually the third day in a row that we had her and neither Eric or I were all that fond of her. The first day she came in too early while we were still sleeping and with the subtlety of a hurricane so we definitely did not get off on the right foot. It is rare for us not to like one of the nurses. Anyhow, when it came time to re-access Eric's port she missed. Not only did she miss, but when he told her to take it out, she didn't. She was fiddling with it instead and when he told her to stop touching it, she kept right on fiddling. I was not happy and obviously neither was Eric. I said that we would not try again then and instead would get someone on night shift to do it. We ended up having a relatively new nurse on night shift, so one of the more experienced nurses did it. Eric was really nervous but she had no trouble at all.
It is Sunday morning and Eric's WBC counts are still increasing and blasts are now over 15. The Onc on for the weekend came to listen to Eric's lungs and she says they sound about the same as yesterday, but he hasn't been coughing as much or needed as much Ventolin today. She said we could hold the treatment that is causing the differentiation syndrome but they believe it is doing good things so don't really want to hold it unless his symptoms are getting worse. She also said it's not unusual for the new chemo that is supposed to decrease white blood cells to take up to a week to work so she isn't terribly surprised that the counts are not dropping yet. She did say this has to peak and she had hoped that would be yesterday. I asked her does it have to peak? Why wouldn't it just keep increasing? But apparently they do believe that it will. At any rate, we can't leave here until there is a trend of these counts decreasing, so it's not today, and it's not tomorrow. On the plus side, Eric's Oncologist is responsible for the ward this week so we will get to see him a lot. Meanwhile, we are still on isolation through Monday and running out of movies to watch. Eric asked for waffles again this morning and while the Child Life Specialist was here she said she'd put a sign up on Eric's door soliciting movie suggestions.
I did not trade with Chuck at all this weekend. All Eric wanted was to go home on Friday and he wasn't allowed, so it would have been terrible if I had.
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