DI Day 37

Delayed Intensification Day 37... 13 days to go!
We had a pretty good week after we finally started our day 29 chemo. We kept Sofia on a steady dose of zofran which seemed to do the trick as she didn't complain of nausea all week! Our at home chemo, both IV and oral also went without a hitch. On Monday after I administered her last IV chemo of the week, I had to de-access her port. I've seen this done countless times and felt pretty comfortable doing it. Those of you who have any experience with ports or Picc lines will know that the most challenging thing is not the actual de-access, it's removing dressing! The bandage they put over the port has to stay on there nice and strong so it hurts, like really hurts, when removed. Luckily, Sofia is getting better with it, but there are still many tears shed. After we were free from the port we had three days to play, swim and shower before getting accessed again yesterday. The chemo she received last week is supposed to drop your ANC, your red blood cells and your platelets. As of Wednesday, Sofia's RBC and platelets were good and her ANC was 840, so we were happily not neutropenic or needing transfusions. We would get another blood test on Friday morning before her procedure.
Thursday night, our normally very happy son, was a bit whiny at dinner time. As I went to get him, he was burning up with a temp of 101.5! Panic sets in as this is the one stage we don't want Sofia to be exposed to anything. I quickly got him some Tylenol and called our pediatrician (yes, I have his cell). We decided I would take Sofia to her appointment on Friday and Mike would take Michael to the pediatrician. I was crossing my fingers for an ear infection! Poor baby is sick for the very first time and all our attention has to go to Sofia.
Luckily my mom also had an appointment at Stanford yesterday so she was able to come with us. Now that Sofia has had so many of these lumbar punctures she now knows she doesn't like "the sleepy medicine" and she panics when we get into that room. I hold her in my arms until she's asleep and than I lay her down. It never gets easier for me so it was nice to have my mom there when Mike couldn't be. Knowing that Sofia has struggled with vomiting after LP's the anesthesiologist thought he was mix in some benedryl with her zofran. Word to the wise, propofol and benedryl lead to a horrible wake up!!!! The propofol is pretty easy to come out of, but the benedryl is not. So instead of just waking up she was like a wild animal arching her back, flailing her arms and screaming loud for about 15 minutes straight! The nurses and I had to hold her down until it wore out of her system. It was horrible to see and I hope to never see that again! I'll take the vomit!!
As my nerves were completely shot, I got the call from Mike that it's a virus and he was contagious before the fever. The nurses told me there wasn't much we could do now other than lots of hand washing as we went between the two of them. We had just gotten the results from that mornings blood test and her ANC had dropped to 360! Yep, neutropenic and can't fight off germs. Any fever for Sofia is a guaranteed hospital stay because her ANC is expected to stay low for about the next 4 weeks. Considering we never leave the house, I'm so confused how he could have gotten sick?! Our Doctor told us that adults are carriers of lots of different viruses that we don't actually get but we pass on the germs. So you run to the store to get milk and you bring home a virus, awesome.
Sofia felt good yesterday and feels great today. She's not happy that she can't hug and kiss her brud! Noni's fever broke today, so now we are just taking it all day by day, praying for no more fevers in the house.
We will continue giving IV chemo until Monday and than de-access for the last time at home. So, 13 more days, 5 more IV chemos and 6 more days of oral chemo. Praying for no fevers and no transfusions during these last few weeks of DI! I know you will all be praying with us.
To end I would like to acknowledge that today is my 6 year wedding Anniversary. When we met with Sofia's oncologist for the first time he said this process will either make you two stronger or it will tear you apart. I saw very early on what he meant. It's very hard to make your marriage a priority with a newborn and a very sick toddler. We don't go out, we rarely eat dinner at the same time and Sofia sleeps right between us. But, Mike and I know that we are stronger and better together than apart, and that's all that matters. I didn't get dressed today but it was a Happy Anniversary because we were all together. #teamsofia