Aug 3, 2016 10:14pm (Sara)

Option Care made one more delivery for us today. We hope this is the last we’ll need. In today’s package arrived three syringes full of ARA-C. They have found themselves a home in our garage fridge until we use them all over the next few days. In addition we got more heparin and saline flushes. It looks like they sent us more chemo gloves, masks, and bags for spills. We already have a sharps disposal bin as well as the chemo disposal bin so I’m happy they didn’t send us another one. Those have a nice home on the dryer…well away from any growing arms and curious fingers. We are all set to complete this week’s infusion.

Four more days of ARA-C and 6 more doses of oral chemo (6TG) for this phase. Then we get two weeks off. The “two weeks off” may or may not feel like a break but at least we won’t have to worry about infusing chemo into her port or convincing her that the “tootie fruity” flavored pink stuff is indeed medicine. She’s usually so good at taking meds but since this med has to be on an empty stomach…Maya usually fights it. As a dragon does, right? Ultimately, it isn’t too much of a battle but we all look forward to not having to do it for a while.

Today we got to see our friends at the clinic. We got to see Denise, Mary, Ty, Lucy, Jessie, even Patty. We got to hang out with Dr. Salo along with “pig” and “cow”….these are Dr. Salo’s little animal flashlights that make an “oink” and a “moo” when the doc is checking Maya’s mouth for sores. When Scott and I actually need to have a conversation with the Doc…she often hands Maya these flash lights and we get a solid 10 minutes to discuss. It’s genius really.

After Denise accessed Maya’s port (aka her Boodah button), we had a bit of a wait. Unfortunately the clinic was busier than I have ever seen it. Unfortunate for us in that we had to spend more time there than anticipated – and had not prepared for it really. I always burn myself when I think it will go quick. I didn’t pack substantial snacks or a lunch. I didn’t think to bring my breast pump (ugh). Scott missed meetings. I missed an appointment. Maya was grumpy…and we all left very hungry. But mostly it was unfortunate to see how many people are getting treatment right now. There were at least 3 little shiny bald heads running around playing in the play room. There were 3 or 4 other kids of all ages hooked up to noodle poles just getting chemo for brunch.

Then, of course, there were the families: moms, dads, siblings, friends. All of us trudging through this muddy day together. We do not know each other but we are all there together. We are fighting together. We might look distracted; we all stare at some sort of device. Some diligently working on lap tops trying to keep production alive among this chaos. Some playing video games on the play room Wii. Some glaring at their phone – at whatever distractions we all can find…to suspend our reality for even just a few minutes. Many breaking our gaze upon the phones or computers to see if anyone else would make eye contact. It’s not rare but eye contact is always intense while in the infusion clinic. We need some sort of salute to one another. A salute to each other. To recognize that we fight together. To help clear the fog and remind each other we are not alone. No matter if we are strangers. I see you. I feel your pain. I fear the worst with you and I ache for the best with you and for you. We all wish we could meet in some other realm in life but this is ours. So here we stand. We stand up. And we stand up together.

Speaking of families – it is always a pleasure to see our superstar, Victoria. And of course her mom, Iris, and brother, Marcus. What a wonderful and strong family. I’m SO pleased to say that Victoria has 7 days left of chemo infusion and on next Friday August 12th…she gets to go ring her “no more chemo” bell. As much as we’ll miss seeing her, I am thrilled for the whole family. For the world actually, that this young lady’s life is saved. She will do great things for this world and I’m beyond proud to know her. Congratulations to the Mathews family. Strong and calm never looked so good.

Motherly assessment: WBC: 1.8, Hgb: 9.5, Platelets: 285, ANC: 1000. Liver function: normal. Renal (kidney) function: normal. Electrolytes: normal.  Maya is good. I have told many people and perhaps I have eluded to this notion in past posts but…if Maya wasn’t so bald and I didn’t see a consistent drop in her white blood cells, I would think we were placed in some placebo-group in the study. Overall she is good. Not good, great. She runs, plays, climbs, and is killin’ it on the balance bike. She is learning and memorizing almost everything she hears. She is working on sight words (she can pick out Maya and Dragon in any sort of literature). She is adding: she (without being prompted) added 10 and 11 when talking about how many people we have in our family with Gramma Sandy. Yes she said “twenty one”. I don’t think I’ve seen Gramma Sandy’s eyes so big as when she was telling that story. Maya doesn’t seemed phased or changed at all. It is truly unbelievable. This next week might feel a bit more rough but The Red Devil has been on the losing side so far. While Maya the Dragon isn’t done with the battle yet, she most certainly has won most of the rounds in the ring. She’s about to make the Red Devil go running with his arrowhead tail between his legs. Thank you for helping to save my child’s life but…bugger off Red Devil.
Love is Life.