Mila has been wonderful. We hit our mid-way point this week. Prior to that she had her standard one chemo Wednesday (twice) which has become a breeze. When Mark & I went to the Jimmy Fund Clinic at Dana Faber for the first time it was,… how do you say.. eye opening to say the least. A slap in the face that brings you to reality actually. Stuff that you thought mattered or bothered you actually didn’t matter whatsoever. It’s disappointing that people lose sleep over little shit. And that’s what it typically is. I’m not judging. I am probably the worst culprit. But the day you walk into the Jimmy Fund for the first time you count your blessings. And are thankful for your health and for that fact that you have time to worry about that little stuff.
Anyway, I remember seeing moms or dads alone with their child. And I thought to myself, I hope to never be comfortable enough to be coming here alone with my kid. Well, guess what? I am 100% comfortable enough and have been taking Mila on my own the Wednesday’s between the “big” three chemo Wednesdays. I felt the same way when they “Welcomed us to the family. The family no one wants to be a part of.” Thank you? I will say they are sincerely an amazing family to be apart of.
Mila’s hair has been thinning out and her twin has been pulling one curly tendril out after another. That made it just about time to talk about shaving her head. Mark and I discussed and he was always saying that once she starts looking like the crypt keeper that it’s time. However, it’s hard to notice the loss of hair when it’s your own kid that you see day after day. I also spoke with my mom, who has gone through this twice that confirmed that it will just feel better for Mila. So I shaved her head. It took a couple attempts before I could actually follow through but we did it. I came out a bit sweaty with mascara under my eyes but Mila, she came out glowing. She was (is) beautiful.
My good friend who comes to the three chemo Wednesday did it again. We have it down pat now. Well almost. We left the house and I forgot the stroller and there are crazy morning drivers… Doesn’t matter. We did our thing and we got through another Wednesday.
This past Wednesday was also the last backpack Wednesday. You heard me. LAST backpack! For those that don’t know, she comes home with a hydration backpack. The size of her body and with an arms length of slack. That went fine. Nothing a plethora of toys on the table while locked into the high chair can’t fix. It was also the last time that I will have to de-access her (pulling her port access out). I felt strong and proud to be able to do it. And extra strong and proud that it was the last time. [sweating]
Thursday Mila had a full body PET Scan. There were NO signs of tumors to be found. It was a huge sigh of relief. On the other hand… and I’m not going to sugar coat it… she looks sick. She looks like she has cancer. She’s so so tired. She takes me by the hand and walks me up the stairs and leads me to her bed. She goes to bed two hours before nap time. Ava takes her nap at her usual time and they wake up together. Rest is what she needs and at not even two years old she is responding to it. After her most recent blood draw they confirmed that she will likely need her second blood transfusion next week. Likely Tuesday. She’s such a good baby. She is beautiful, happy, and as usual, amazing.
We are so lucky to have Mila’s nanny. Mila is so loved and taken care of. Every morning Mila’s nanny comes to see her with a bag of her favorite treats and toys. They spend time outside in the fresh air walking and playing. So yes, she is tired because she is responding to her treatments but she is also tired because she has such a full and eventful morning!
Somedays I just want to put a straw in a bottle of prosecco. And awaiting the PET scan results I essentially did. This is a journey. And we are doing it. Some days a little more ragged than others. But we are full of good news. And are thankful for the health that we do have and we practice daily letting the little stuff roll off our backs. As well as attempting to keep the wine straws in the cabinet.