Jul 19, 2016 11:35pm (Sara)
This morning was the fourth (in a row) “no cry access”. Not even a whimper or a peep was expressed. Angela removed the EMLA cream covered in a small sized tegaderm that I had placed on Maya’s port site while waiting in the drive way of Gramma and Grandpa Morrison’s as Scott took Lincoln in to hang with them for the morning. I let the three year old determine how much cream was placed on the sticker just prior to placing it over the port site so today’s goop happily oozed from beneath the tegaderm. Maya’s port (aka Boodah button) is surgically placed about 2 inches above her three year old nipple…also right where Diono’s RXT purple suede car seat strap safely rests snugly against her chest. I’m always nervous that the cream has moved so much that it won’t work appropriately. The good news is that she didn’t feel a darn thing as the 3/4 inch needle was stabbed into her chest. Angela said “One, two, three, pinch”……nothing. Maya felt nothing. Angela is most certainly one of our angels. Maya has become such a professional cancer patient I don’t know whether to be stoked or to weep. I usually feel a combination of both those feelings constantly or at least consistently through each day.
We spent a lot of the morning at the Starbucks at Renown waiting for lab results. Dr. Salo’s office is having to deal with a bit of bureaucracy in the way they get lab results back. It sounds like since they are a relatively new clinic, they are running into issues; it takes less than an hour to get results back when we get them drawn at the infusion center but it can be hours when we are at the consortium (Dr. Salo’s outpatient office). We could just head home after the draw but if she were to need a transfusion, we’d be turning around again. So we hang out at the Starbucks (as Maya calls the StarBox).
Maya’s ANC is 590. While this is up 200 since Friday, she didn’t make it for the second time. Even her monocytes were down a little…which means that I have no idea if we are on our way up or back down. When I spoke with Angela, she was waiting on a call from Oakland to determine if we would be able to get in for a lumbar puncture on Friday or if we’d have to wait till Monday. The short notice admissions need to be handled carefully…we don’t want to show up and not have room on 5 South (the neutropenic unit). She will call us tomorrow to discuss if we should come back to check labs again Thursday for a Friday admission to Oakland or if we should wait to check Friday for a Monday admission. Angela is very nice to try and answer my panic induced questions: is this amount of delay normal? Does it change her ultimate prognosis – I mean there is a very intense protocol that is well scripted for good reason…does a week change things much? She mentioned that it is more normal for kids to need more time for blood recovery during this phase than is it to make counts right away. Great. Thank you. I wish I felt better but for some reason is still feel like I wanna throw up.
I want this phase to be over with. It just keeps getting more pushed back. The next phase of chemo has assaulting side effects. Little Alicia has already needed blood and yesterday she needed platelets. Its a week and a half of home infusions where we will be de-accessing Maya and infusing her with chemo on our own. She’ll have an ANC of zero and we have at least two days in Oakland. We’ll leave Lincoln here with family and I know he’ll be safe but…its our first night away from each other and I wish it was for better reason. I get anxiety leaving my children and Scott no matter what…this just seems like a super lame thing to “initiate” the sleep overs. Scheduling is a nightmare these days. I’m so grateful to have the job I do but now I’m feeling pressed and like I won’t make my commitments. I know it will be okay but I’m not the kind of person that is “okay” with it. I care about my job, the families that I help, my obligations to hold my license. Its a real “thing” and I get nervous about it. Because I love my job. It makes me so happy and fulfilled…and helps us pay bills.
I spoke with a few of “cancer moms” today….that sounds weird but you know what I mean right? Heather, has quickly become such a dear friend and we haven’t even met in person. Thank you Heather. She puts things in a way that makes me breathe a little easier. Janet, Ethan’s mom, reminded me that I really have no control and that it is okay. Sometimes I need to remember that. Iris, Victoria’s mom, shared experiences with me today that made me feel less crazy for feeling the way I do. There are so many wonderful people I have met through this experience that help me get through each day. They also help me problem solve. After talking with each of the mom’s I realized…maybe they are on to something. Iris mentioned that Victoria’s ANC would be suppressed and they figured out that once she stopped stressing about her immunity or the pending pathophysiology exam she was studying for…her ANC would rise. Heather told me to take Maya and do something fun that she might not have the energy to do soon….Alicia’s blood recovery has been faster than Maya’s…they do fun things. Maybe the are on to something! Maya doesn’t “stress” about her ANC but she has been cooped up in this house and rarely gets to do things.
I have no idea what we can do to help Maya feel less stressed but since Thursday is clear for us (well unless we need more labs) I think we’ll make a trip to Tahoe. Maya hasn’t been this year and she loves it up there. There is something very healing up there so…instead of trying to figure out how I can get my refrigerator to dispense Pinot Grigio…maybe we should try the Lake.
Love is life.