Wednesday Aj had his normal chop - round 5 - Ding Ding Ding - one more to go!
Thursday back to Seton and lumbar - that you all got a really good look at :). His WBC had gone down to 2 so Neulasta today to boost it.
He has felt crummy again - like usual. Metal taste in his mouth and sleeping a lot.
Dr. Fayad called me yesterday and told me that the PCR test was positive. He really took me by surprise and I didn't ask all the questions that I have right now. But in short, the PCR test positive means that Aj is at high risk for relapse. Now it doesn't mean that he for sure will and if - maybe not for many many years. Dr. F said he has had patients who was positive and didn't relapse.
Also, this is after 3 rounds of chemo - remember we went there between round 3 and 4. So, maybe its all gone by now, we will find out in June when we go back down for the last biopsy. They will do another staging and do anther PCR and flow test at the same time. Its the same as he had last time we were there.
It felt a little bit like steps backwards yesterday after having such great news about the remission a week ago. I didn't tell Dr. F that Dr. H had given us the results from his tests. So there seem to be a difference in how they read them I guess. Or if Dr. H didn't read that part. Not sure...
But since Dr. F is the 'pro' we listen to him, even though it took him 3 weeks to call us back *urghhhhh*
Amira said, he says you don't answer the phone - I told her he has only called once so missing a call once is not being difficult to get hold of. She agreed.
But again, we can't look at this as bad and jump into conclusions that he will relapse.
There is no point worry about the stuff we can't control right now anyway and since he has shown to be a star patient... he will be fine. The three last chemo treatments will take care of it!
Also, I am going to email Dr. F a bunch of questions that came up with as soon as I had hung up with him. I was at Costco with 3 kids and a full cart in the car park when he called. Managed to almost crash the cart so it tipped over when I was holding the phone in one hand and getting the kids in the car with the other and steering cart with my foot.
So, it was hard to be 'sharp' and ask all the 'right' questions, but when I do - I'll of course report back to you guys! I won't have any definite answers to give until a month but at least more info.
Soooo.. back in the waiting game again. Getting used to it now. No point in getting irritated or impatient, we won't find out earlier anyway. Plus we have too much to do right now... packing moving and kid's birthday party tomorrow. Roller skate party to ABBA music !!! Chloe wants it to be Chipmonk Cd - so I guess a mix of it. You'll see some pictures tomorrow!
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