No More Holds

We were back at the hospital today and Ellie is officially off her chemo hold. The past couple of weeks have been filled with some downs, but it looks like she finally may have turned the corner towards improvement. 

After Ellie's initial platelet drop she was put on a chemo hold for two weeks. When we went back last week to get her blood counts checked again there was good news and bad news. The good news was that her platelets had dramatically improved from 42 to over 160. The bad news was that her neutrophils plummeted, giving her and ANC of <500 which made her neutropenic and continued the chemo hold.

At the hospital with her sisters where everyone got knitted hats/headbands.

Ellie's hair seems to have stopped falling out, but unfortunately the brown spots/scabs on her head are still there. It can be a common side effect of chemotherapy, but it is one that we have not dealt with until now.

In addition to these brown spots, Ellie has developed an unusual rash that is covering her head, face and the top part of her chest. To be honest, it is stumping the doctors. It could be viral, a side effect of going off chemo, skin irritation or heat rash. These were some of the probable causes that we threw out during our discussion with her doctors this morning. They agree that it is nothing serious, and honestly it does not seem to be bothering Ellie too much. We see her rubbing them sometimes, but will only complain about it if asked. Just like most of her pain. Ellie really is amazing at handling everything that she is going through. We can tell when she is hurting, but she rarely verbalizes it. Like any other side effect we are keeping a close eye on it. Ellie goes back to the hospital next week for treatment and if it is still an issue, then she will be referred to a dermatologist.

This picture was taken several days ago.
Sadly, now it is much worse, but you can still get an idea of how they look.

Due to the persistent flu that Ellie has had over the past 5-6 weeks, she went into the hospital today for an additional treatment. To be clear, the flu does not affect Ellie the way you might think. She seems to spike a fever for about 36 hours (which during that time includes a visit to the ER) and then that's it. No other serious symptoms that we have seen. So while we are grateful that it has not adversely affected her, it is still an annoyance. 

After discussing with her doctors, we decided to try another round of an IVIG. She has had this treatment before so it was something that we were familiar with. If I am relaying this correctly, it is a protein that is added to her blood to help boost her immune system. We are hopeful that it will help Ellie's immune system recover. It is a somewhat lengthy treatment at 3-4 hours, but she was still in and out in one day with a total stay of 8 hours.

I managed to sneak this picture...

...but Ellie made it very clear that she only wanted Diddy and Lamby in the picture.

Ellie and Diddy with their "best ports ever".

Ellie is very considerate to her lambs, making sure that they can see the movies too.

So, this is where Ellie is currently at: recovering from the flu, boosting her immune system, no longer losing her hair, yet covered in an unidentifiable rash. This is progress. One of her nurse practitioners will no longer let me say that we are crawling. We are going to get back up and run to that finish line. So here we are, as a family, getting up and helping Ellie run the rest of this race. 

And you are helping us get back up. 

I would be remiss if I did not mention all of the people that have come to our aid in so many ways over the past two weeks. Thank you. So many people reached out to us, and honestly, I have not had the chance to respond to everyone yet. You have prayed, sent meals, heard our struggles, carpooled with our children, sent awesome encouragement posters, bought coffee and breakfast for all, sent entertaining gifts of love...I could go on. Thank you for the boost you gave our family when we desperately needed it. 

Next Tuesday Ellie goes in for her next treatment. She only has 5 hospital chemo treatments left. Five! You can count that on one hand! She is so, so close to being done. The next treatment is a big one as it includes a lumbar puncture, but even then she only has two of those left. The end is drawing near and the light at the end of this dark, terrible tunnel is finally getting brighter.

Thank you for your continued prayers for Ellie and our family. We appreciate your love and support.