My son has become a night owl, like his mother!!! He is still wide awake and not ready for sleep. At least he thinks so.
It’s been a quiet day. A bit sobering, a bit exciting, a bit teary. For the last four years or so, I’ve been gathering with some really great women on Friday mornings for coffee. We never know who is going to show up, you never know what topics will be on the table. Nana arranged to come and sit with Gregory on Fridays so that I can still keep this ritual. And ritual it is. I call it my Friday Morning Therapy. Hell of a lot cheaper, too. We have been through some amazing things, together. As they stated today, it’s my turn. I hate that it’s my turn. Yet, it is what it is and I am so grateful to have them in my life and be such a large part. If you are local and haven’t tried it yet, Chaps is where we go and it is divine. The coffee is awesome, the food, the kitsch, everything. The owner Celeste? Irreplaceable.
I’ve never been a good housekeeper. It’s not my strong suit, and I hate it. There are so many other things, I’d rather be doing. Lately, I’ve really enjoyed the simple tasks of a few loads of laundry, a sink of dishes, vaccuuming. I have troubles sitting still for more than 15-20 minutes. Which means I have been doing alot of the little stuff, that’s been put off for so long.
I’ve been trying to coordinate Gregory’s dental appointments. He needs to get his exam/x-rays and any dental work done, before we head over for transplant. I would also like to get it done before chemo starts. He will not be able to see a dentist for some time, post transplant. Even though they are only baby teeth, I know that the health of baby teeth determine the health of adult teeth (I think I’ve already mentioned this before.) In order to prepare him for his exam, he will need a platelets transfusion and an antibiotic. We go in Sunday for a CBC check and his transfusion. His appointment if for Tuesday morning.
We also got word today, that they have a PRELIMINARY report on his HLA typing. Which means we are one step closer to obtaining a match. There are still several steps, but it’s closer.
Yesterday I changed his central line dressing and noticed that it was a little red and crusty. Just to be safe I called the IV people. It’s totally normal and healing well, btw. During our conversation, the nurse mentioned that she saw we were admitted the other day and apparently the last “rubber stamp” test did come back as positive for JMML. Not that it is a surprise, except it would have been nice to have had the confirmation form the doc.
It’s really sinking in how rare this is. There is very little information available. Even on big. kids cancer sites. I think I would like to talk with some people who have had kiddos that went through bone marrow transplant. I’m not sure, though. I know the process is incredibly grueling. I also know that each case is different. I’m trying to stay positive. I should also add that I do medical billing for a dermatology group. The world of medical terminology, white coats and even hospitals do not freak me out or intimidate me. Neither does the insuance piece. For obvious reasons. Also, all three of the OffSpring were by C-Section. The world of hospitals has always been a happy place, for me. I know that hospitals are supposed to be there to help. Most of the time, they do. This is what I’m banking on. I also lived in Seattle for four years, three of them in the U-District. Which is basically where we will be going. My comfort level has been very high, due to these reasons. Thank the gods for that.
Curtis and AnnMarie recieved their first SuperSibs packet today, in the mail. They both had a quiet pride as they went through the stuff. Also, I think Larry is going to try and take them to a flick on Sunday (Thank you Tara!! I should be sending you Birthday love, too!)
I’m anxious to see where is blood counts are on Sunday. I’m also anxious to get this kid to SLEEP!