Tired. Worn out. And it’s just the beginning. Another six hour trip to the doctor, today. Gregory’s platelets dropped to 24. Even with the low dose chemo. We haven’t adjusted his dose, though. He has his dental work tomorrow, so he was transfused, today. Six units of platelets and his one hour post count is 168. We have another count check on Friday. We will see how much is drops. His hematocrit seems to be holding around 25. His white count is 25.
I received a phone call from Seattle Cancer Care Alliance, today. I now have a contact for our Search Coordinator. They are the folks that did the HLA typing and are coordinating the donor search. They also requested additional labs. Not quite clear on what they needed. I will find out more. Dr Reynolds also requested additional labs. Microbiology something-or-other stuff. Again, not quite clear. These results won’t be done until April 28th. I’m beginning to think that I’m not the only Polyanna in this scenario. Getting a match, completing Chemo and being in Seattle by May seems like a wet dream. I think that, realistically, we will be lucky if we get there sometime in June.
Note to self: Quit googling JMML.
This cancer is so rare, that it is incredibly difficult to find patients, online, that are CURRENTLY progressing along the same timeline as we are. Either that or they aren’t online. ‘Cause everytime I think I’ve found a group of fellow patients, many of them are several years post BMT, currently going through repeat BMT’s or the little tykes have passed away. I’m also having diffuculty finding folks that were diagnosed around the same age. Most kiddos are under two, with a large percentage of those being under 12 months.
I still get baffled that we are in this nightmare. Some days I’ll have several moments of “normality” and something snaps me back and I get hit all over again with the enormity of what we are doing.
Today were conferences for AnnMarie and Curtis. I really wish I could have been there. Not because I would have handled it better than Larry, I just wasn’t there. Since this week is conferences, it’s early dismissal. Larry and Nana have balanced everything so well. The kids are handling it really well, too. Next week is spring break and I’m hoping we have at least ONE day of nothing to do.
OK, local yocals. If ANYONE is making a trip to Huckelberry’s on Monroe, I have a request. I’ve been dying for homemade Miso soup. Made from Miso Paste. Not the pre-packaged mixes. Can anyone help me out??? I just cannot seem to find the time to get there, while they are open or not crawling with people. I can get the firm tofu, green onions and seaweed anywhere else. It’s just the paste that is giving me grief. I’ve heard that Fresh Abundance carries it. Not to sure about that, though.
I have more to get out, but Gregory is sleeping peacfully, Curtis and AnnMarie and with Nana and Larry is out. I think I’m going to steal a few winks. We have to be at the hospital at 6:00 tomorrow morning. I need to bank some z’s. Love and fierce squeezes to you all. Gotta jet.