What a week we’ve had! Peter has enjoyed lots of time outside, evening walks, pool time (after he was de-accessed) and late night movies. To look at him you’d say he is doing great – good color, energy, smiling, and his speech is taking off. It is amazing what he says when there is no one else doing the talking…..it gives me hope! Peter has had his naughty times and his funny times – I came downstairs to get his shoes and when I went back upstairs he was no longer in my room. I could hear music playing from Alexandra’s room – and low and behold little dude is standing in her room, my mascara in his hand, singing away to the song on the radio as he rocked back and forth, using the mascara as a microphone. I so wish I had my camera to capture that moment of just pure play and joy!
Peter did have labs this week and they were disappointing. We want his ANC to be 1500 and he went from 100 to 380 in 10 days. It normally doesn’t take him this long to recover – so of course I am on a roller coaster of emotions right now. I am working on remaining optimistic that this is just a slow recovery given how much his little body has gone through….but I do have times were I see him look and smile at me, and I fear losing those moments. We are going back in Wednesday for more labs. The hope is that he has improved and possibly even ready to start chemo on reduced dosage. However, if his ANC is not better or has worsened, then we will most likely need to do a bone marrow to determine if he has relapsed. My stomach tightens just thinking about it.
The first couple of days that the family was gone, I felt so disoriented. I missed them and was toying with sadness over many things. Then Peter and I found our rhythm! We have had just so much fun this week. Even though we haven’t ventured far because of his fragility – we have just enjoyed so much time together. Even though it isn’t always easy – and his sleeping has been erratic at best – I am going to cherish these 10 days of undivided Peter time for ever! And despite the stress of work and Peter’s health – I can’t help but smile big every time Peter says “Mama, come on…..let’s go!”
Keeping this short as getting Clifford (yes, the big red dog on DVD) to ‘babysit’ Peter for 10 minutes is a luxury – usually only get about 3 minutes before he realizes I snuck away to do something.