May 2, 2016 11:46am (Sara)
This phase has had an interesting “feel” to it so far. It almost feels like we have been in the dark while at the same time we are seeing amazing spark and light. Not having lab work for over 10 days was a little more nerve wracking than we expected.
We are driving to the clinic as I write. Once Angela accesses Maya’s port they will immediately pull labs and we have to wait. Maya likes to help with the vials of blood. She’s actually pretty good at it. As we wait for lab results, we’ll see Dr. Salo for a “check up”…and I sure we’ll ask questions.
One question we have on the list is: “how many kids have to go to ER during this phase (interim maintenance 1)??” We don’t want to freak out if we don’t have to but, it just feels like we have no idea. The last labs we saw were good but an hour later she was infused with two chemo drugs. What does that do to her counts? Do they even know?
For the most part, Maya has been great. She has been on a couple of adventures and she has had a few great visitors. She even got to practice her massage technique on Jennifer. Jennifer is Maya’s personal occupational therapist and new found friend that came to visit and offer techniques (for Scott and I) to massage Maya’s abdomen. We are hoping to prevent (or relieve) any constipation that comes with this treatment.
Auntie Kerrie came for a visit too! It was so much fun to see how she lights up to have the people who love her around. The highlight for this past weekend was Auntie Gen’s birthday brunch at Auntie Megan and Uncle Adam’s. We got to spend almost the whole day playing with them and Liam. It was wonderful for the kids…and the adults. It’s amazing how my soul can get some respite with hanging with my besties.
All this being said – we have no idea if any of these activities were appropriate. We really have no way to know (without an arm pokey) what her immunity is 5-7 days after an infusion. But what are we supposed to do? Just keep us all in isolation? We would do that if the chance of her getting sick is great. We would do what we have to do. Though it has been made clear its “when” and not “if” she goes to ER…our goal is to protect her from that as much as possible. So I guess that’s our main question this week.
She has been a little more pale than I like and the bruising….is it low platelet count or her clumsy self?
We are almost there.
Fingers crossed for strong blood counts and a calm soul.
Love is life.