Friday, September 30, 2016

Post-Hospital Visit Check

This past Wednesday Ellie had a post-hospital stay blood count check, and to our surprise, her numbers are continuing to go up! Seriously, she already had a room ready for her in the infusion center, because her doctors were sure that she would need more blood. We were all shocked when we saw the results.

Ellie was so happy to go home and not stay at the hospital that day.

Hemoglobin: 10.7 (steadily going up)
Platelets: 120!!! (the highest they've been in a long time)
ANC: holding strong at 720

To clear up any confusion, platelets are identified in the thousands. So, 120 and 120,000 mean the same thing. I apologize for any confusion I may have caused in previous posts.

This numbers are amazing for two reasons:
1. Ellie is improving and no longer in such a delicate state.
2. Ellie will most likely make counts next Tuesday and will not be delayed with started her next phase of treatment. 

When Ellie came home from the hospital, we knew that her next phase of treatment was to begin on October 4th. Whenever she enters a new course of treatment, she has to "make counts". Her ANC must be over 750 and her platelets over 75. Upon leaving the hospital no one really thought that her body would recover in time. She would likely be on a chemo hold until her blood counts improved. But, this visit gave us hope! It looks like she may be good enough to start next Tuesday as scheduled. This is wonderful news!

So, Ellie's blood counts were the good news. Her weight, however, was the bad news. She is losing weight again. While she was in the hospital, Ellie was on IV nutrition, so her weight actually increased a little. Since coming home though, her weight has dropped. This is very frustrating. It took Mike and I such a long time to finally get some weight on her and have her regularly eating. It feels like the hospital visit erased all of that work, and now we are back at the beginning.

What does this mean? It means that fat is the most important thing for Ellie right now. What does that look like? Avocados, cashews, butter and heavy whipping cream. Ellie loves avocados, so we continue to give her those. We recently discovered that she has a taste for cashews, so those have been added in as well. Butter gets put on all of her food, and her cup of milk is really half whole milk, and half heavy whipping cream. We have tried everything. Her taste buds are completely warped right now, so almost everything is unappetizing to her. We have been giving her an appetite stimulant again, and have slowly noticed an interest in food. 

Ellie's breakfast one morning. All she would eat was the butter.
Win. That's all I really wanted her to eat anyway.

In addition to eating, the other struggle Ellie has been facing this week is separation anxiety. After being with me 24 hours a day for 5 days straight, she did not like being away from me, which unfortunately had to happen a lot this week. There were two separate instances where after dropping her off with my mom, she screamed and cried for over 45 minutes. To give you some context, Ellie has seen my mother, on average, probably 3-4 times per week for her entire life. This was clearly not normal behavior for Ellie. But, I love my mom so much and her response was perfect, "I can hold out longer than she can."

Calm and happy at Nana's house after the meltdown.

Please pray that Ellie continues to physically improve, that her blood counts stay high and her appetite increases.

As always, please pray for Ellie's complete and permanent healing, and for no short term or long term side effects from the treatment. 

Oh, and one more thing, Ellie has starting losing her eyebrows and eyelashes. I know. You forget about that. I was hoping that part of the hair loss wouldn't happen, but it has. To be honest, it's not as bad as I thought it would be. She is still, and will always be, our beautiful and silly Ellie. 

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