Sunday, August 28, 2016

Delayed Intensification Progess

We are almost half way through Delayed Intensification, and a lot has happened, with more still to come. Ellie made it through her second week of steroids, and we are now going through the withdrawal period. Overall, it's not too bad. Some days she refuses to nap, while other days she naps for 3 hours straight. There has been a lot of moodiness, but a lot of joyfulness! Some days, she cannot stand for anyone to touch her, and others all she wants to do is cuddle. Sometimes she wants all of the food, and other times she will eat nothing. It's a lot extremes, yet without being too extreme. 

Last Sunday, after taking a 3 hour nap, she woke up to
cuddle with me on the couch, then fell asleep again.

Her's almost all gone. She had a lot of new growth over the past 3 months, but even that is starting to fall out now. 
This started up again last Friday.
There was so much hair after leaning against my chest for a few minutes. 

This past week was Ellie's week off, but we still had to go to the clinic to check her counts and to the infusion center to get her 3rd round of the IVIG. I am pleased to say that Ellie's counts are up! Over 800! Praise God! She still has a cold, but she has not developed another ear infection like she did in the past, so I think that the IVIG is slowly making her stronger. 

Holding on to her lollipop while walking down the hallway from the clinic to the infusion center.
She likes to take her time strolling that hallway, frequently gathering an audience. 

That day was long. We were there for 7 hours. Eva and Nora started school on Tuesday, so this past week was filled with some unique struggles. Since they only go to school two days a week (Tuesday and Thursday), I am now juggling homeschooling on the other days, fitting it in where I can around Ellie's hospital and doctor visits. This means a lot of planning ahead for me and working ahead for the girls. I am not worried about it. Rather, I am so grateful that we have the schooling situation that we do. It is the perfect fit for our family in so many ways, but especially now as we continue with Ellie's treatment. 

Onto this week. It's going to be a doozy.

We are now entering the second phase of Delayed Intensification which brings new challenges for Ellie. There is a new chemotherapy drug that she gets, but she has to be highly hydrated before receiving it. Since it's basically impossible for a 2 1/2 year to drink as much liquid as needed, she will be admitted into the hospital overnight and given fluids. This will happen on Tuesday. That morning, Ellie will go in for a lumbar puncture, and once that's over, she will move up to the oncology floor where she will stay overnight. We will return home sometime on Wednesday. On both of those days she receives another new chemo drug, and will have to return to the hospital on Thursday and Friday to get another dose of that drug. Fortunately, those should be very short visits. Her port will remain accessed throughout those four days, which will also speed up the process. 

So, yeah, we will be living at the hospital on Tuesday and Wednesday, and visiting on Thursday and Friday. And then next week, we get to do (most of) it again. We will return each day, Tuesday through Friday, but there will be no overnight stay.

What we are currently facing is the most difficult part of Ellie's treatment, aside from the initial Induction month where the leukemia was eradicated. Once we are through this phase, we still have two more tough months, but hopefully not quite as hard on Ellie as what she is dealing with right now. From there, around the end of the year, things should get a bit easier for Ellie and our family. 

Oh, and I almost forgot, the hospital stay this week, and everything that follows thereafter, will only happen if Ellie's ANC is above 750. If she does not make this count, then everything gets delayed a week. As of last Thursday, she was just above 800, so we are hoping her numbers continue to go up. We do not want to have the treatment delayed a week if at all possible.

Please continue to pray for Ellie's complete and permanent healing.

Pray that her counts continue to go up, and that every single treatment she receives this upcoming week goes smoothly.

Pray for peace and patience for our entire family.

Due to the busy couple of weeks, we have started the meal train back up. You can sign up for a meal here. We love all food!

And finally, because I am not on social media and have no way of promoting this blog, I have added a section at the top right where you can sign up for these posts via email. Hopefully it works! 

Thank you for your continued love and support.

Update: Whoever just donated $50 to the CCC made me smile REALLY big! Thank you!
You can read all about that in my previous post here

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