Friday, October 14, 2016

Interim Maintenance 2

This past Tuesday, Ellie made her counts! All of her levels were more than high enough to begin her last phase of "intense" treatment until she reaches Maintenance. Maintenance isn't the end, but it gets her closer. It will definitely have its bumps too. It's no Promised Land. That's complete remission. Maintenance....maybe it's the wandering in the wilderness for 40 years? It IS a long time. That would make our present situation....slavery? That all sounds about right. Currently, I feel like a slave to the hospital, blood counts, chemo...the list goes on. But, I hear a rumor that relief is coming. Maintenance is arriving soon. But first, Interim Maintenance 2.

OK, that got a little weird.

Much like what Ellie went through a few months ago, this course of treatment is very similar. The medicine she received is escalating, meaning she receives a higher dose every ten days, pushing her body to its limit. Whatever her highest does was in Interim Maintenance 1, she starts at 2/3 of that and then just goes up. It was rough before. I have no doubt it will be rough now. Still, hopefully not as rough as Delayed Intensification.

Play-doh while waiting for her Lumbar Puncture
After waking up from the LP, she was so cold, shivering, but refused to put on the hospital blanket.
I have learned my lesson: ALWAYS bring her a blanket from home.
After the LP, it was back to the infusion center for more IV chemo. She was very happy and despite her lack of a real nap, did great for the rest of the day.

The bare walls needed something. Ellie took care of the problem.

Ellie often speaks through Diddy. That's what's going on here.
It's as fun and easy to understand as it sounds.

Ellie (& Diddy!) love to help de-access her port.

Ellie's hair my still be falling out some, but it seems to have turned the corner. It is now growing in more than it is falling out. There are mostly blond hairs, but some really dark brown ones too. It will be interesting to see what it looks like as it grows back in. If you look closely at Ellie's eyelashes in the picture below, you can see how they are growing back in.

Notice the couple of long ones, and all of the other short ones.

Overall, a successful beginning to this phase of treatment. We went home, and as per her request, Ellie got to make macaroni and cheese for a snack. Whatever to get her to eat!

So proud of herself!
Three bites into eating it, "Mommy, this tastes yucky. I don't like it."

And so it begins. Again. For the past few days, Ellie has taken not eating to a whole other level. She is not eating more than a handful of food a day and is not wanting to drink much either. She has to eventually turn a corner, so we keep trying to feed her until she does.

On Thursday, Ellie had an appointment with a pulmonologist. To be honest, it was mostly unnecessary. Everything sounded and looked great on Ellie, so there is no need for any further tests/treatments right now in that area. She had some trouble wheezing in the past, which is why this appointment came about, and we felt it was a good idea to go ahead and establish her as a patient, in the chance that she needs to visit in the future. 

Selfies while waiting for the doctor.
"I can do it Mommy."

Please continue to pray for Ellie's complete and permanent healing, and for no long term or short term side effects from the treatment. Like not eating! Please pray that she wants to and is able to eat and drink. 

Thank you so much for all of your love and support of our family.

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