Monday, May 2, 2016

It's Been One Month Today

One month since Ellie's life, and our family, veered off onto a different course. 

The past few days have been busy, yet mostly uneventful. We have been trying to stay occupied, but really have nothing to do. There have been many road trips to nowhere, just to get Ellie out of the house. 

Ellie's most recent appointment, last Wednesday, was perfect. Her numbers are continuing to ANC of 1690! That number seems unreal to me! White blood cells are still a little low at 3.8, but her hemoglobin (9.7) and platelets (146) are going strong! She needed no additional blood, and the chemo treatment went smoothly. We were at the hospital for less than 3 hours.

Despite everything she goes through, Ellie LOVES visiting the doctor.

Ellie loves to growl and pretend to be a monster.
This is one of her faces she makes while playing

This Wednesday she goes back for her final chemo treatment of this Induction period. It will be placed into her spinal fluid via another lumbar puncture. At that point, there will be various tests run to determine if Ellie is leukemia free. The prayer and goal is for her to be completely cancer free, and then she can move to the next stage of her treatment. Even in complete remission, Ellie will receive drugs and chemo for the next 2 1/2 years, all to make certain that the leukemia never returns.

We should have definite answers on her progress this Thursday or Friday. 

In the meantime, it's finally happened. Ellie is eating us out of house and home. Or should I say, she would be eating McDonald's out of house and home, if we let her. The first words out of her mouth every morning are, "I'm hungry." She never stops saying it. Although, the wording varies slightly. Sometimes it is, "I'm wittle hungry", other times it's, "I'm super hungry". No matter the time of day, Ellie is hungry. 

The steroids have caused her taste buds to be off. Nothing tastes good to her, so all she craves are salty foods. They seems to at least have some flavor for her. We cave, a lot. But we are also able to balance out her meals and snacks with healthier foods. So, overall, she is eating AND gaining weight. A lot of weight. I think she's up 3 pounds in just 6 days. Most of it is water retention, which should go away within a week or two of being off the steroid (hopefully Wednesday!), because this little girl is solid.  

Ellie's little face finally has some fat on it, and I think there may even be a second chin situation happening. Her tummy is huge, and even more emphasized by her toothpick legs. Her hair is reeeeeeeally thin, with more and more of it falling out each day. 

We got pictures today. 

Even with all of these drug induced distortions, she is our sweet Ellie. I never want to forget what we are going through right now, even if she is scowling in all of the pictures. 

(Spoiler Alert: She WAS scowling during the entire photo session. If the photographer got a smile, I'll be amazed.)

Even with her drastic physical changes, we really cannot complain too much. She seems to be handling everything as well as a 2 1/2 year old can. And most importantly, she is getting better! It's a funny thing because when she was her sickest, physically she looked the same. Now that she's getting better, she looks unhealthy. As her treatment progresses though, she will just get stronger, even if her outward appearance doesn't match her inward healing.

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

Pray the Ellie is 100% Leukemia free this Wednesday.

Pray for patience, understanding and love for all of us.

Pray for strength for Mike and myself. 

Thank you for reading this blog and checking in on our family. Emails and texts are a source of massive emotional and mental exhaustion for me right now. I'm still playing catch up, so please bear with me. I have read and cherished every message that has been sent.

Thank you for caring so much for Ellie and our family.

PS - For those who have asked, our meal train has been updated. 

(take this afternoon after nap)
She cannot get the food in her mouth fast enough.

This is the location of her port.
The scar is where it was inserted.
Directly underneath, next to my fingers, is where it is accessed.
It is located completely underneath her skin, and the bump is very subtle.

1 comment:

  1. Ellie,I just admire you. Your ball of energy
    and have so much love to give,you will get better cause we need you here. Evonne:)