6 Months Post Treatment

At almost six months, Ellie is adjusting well to life post treatment. Layers of her true personality seem to be revealed every day. Beautiful emotions that were hidden or too hard to share with us remained hidden. But now they are emerging. We are learning about Ellie all over again and it is exciting! And, it should be said, she is FUNNY! There is little better than the sound of her laugh.

There are are still many undesirable side effects that we are still dealing with. Honestly, they could be life long. New side effects could still emerge later. We wait, pray and hope for the best. Her platelets have yet to recover which causes a lot of bruising. She complains almost daily of leg pain. Rage is an ugly emotion that we deal with as well. Still, we are overwhelmingly grateful that Ellie is finished with treatment.

If you are in the Tampa Bay Area, you may have seen Ellie’s face a tad more frequently in the past week. Ellie had the unique opportunity to participate in campaigns for both BayCare and Panera Bread with the Children's Cancer Center.

You can view the commercial here:

https://m.youtube.com/watch?v=adYHlGXrzQU

Thank you for your continued love and prayers for Ellie.

National Pediatric Cancer Foundation
Tampa Ballet Theatre
Brandon Ballet

Happy 5th Birthday Ellie!

Today, Ellie turns 5 years old. That’s 60 months, 26 that were spent fighting cancer. She is four months post treatment and overall is doing great. We feel so blessed to be at this point, and are continually optimistic about her future. Thank you for your continued love and prayers.

  

When your big sisters start school a week before you and you are NOT happy about it...

2nd unexpected visit

When Ellie had her port accessed on June 5th for her final hospital chemo treatment, we told her that her port would never have to be accessed again. As a parent I should’ve known....never say never. Ellie had her port accessed on Monday and again yesterday when she was at the hospital for the second time this week. RSV has hit Ellie hard and we are watching her closely. We want to celebrate and be joyful, but it’s hard to feel that way when she is still sick. When, in her four year old mind, she is still going to the hospital and having her port accessed. She knows that she is done with her chemo, but I’m sure in some way Ellie feels betrayed.

Our family's health is still being attacked and we have grown very weary. We know that Ellie will be healed, completely and permanently. It’s just frustrating when it doesn’t happen in the timing that we want. Please continue to pray for Ellie’s healing and strength.

1st unexpected visit

We aren’t out of the woods just yet. Ellie developed a runny nose and nasty cough over the weekend, and this morning she spiked a fever. Since she still has her port, fevers are taken very seriously. Our morning is being spent at the infusion center, but we are hoping to leave this afternoon. Please continue to pray for Ellie’s healing.

By the Numbers

799 - days Ellie was on treatment for leukemia

568 - days Ellie received chemotherapy

392- consecutive days Ellie received chemotherapy

142 - days on steroids

45 - scheduled clinic visits, not including unscheduled and other specialists

43 - days Ellie did not walk

22 - nights spent in the hospital

20 - total different medicines Ellie has taken

14 - lumbar punctures

11 - ER visits

11 - ballerinas that danced with Ellie

8 - platelet transfusions

8 - IVIG infusions

8 - inches of hair that Eva and Nora donated

7 - pediatric cancer friendly organizations we have grown to love

6 - different chemotherapy drugs Ellie received

6 - roughly the amount of x-rays

4 - red blood transfusions

3 - hospitals Ellie has visited

2 - bone marrow aspirations

2 - surgeries 

2 - times that Ellie lost her hair

ONE strong and brave little girl that survived Leukemia

Single Digits

Nine days left. 

Nine.

Single digits.

To be honest, it is hard to believe that it's almost over. When Ellie first began treatment we thought this day would never come. Back in April of 2016, June of 2018 seemed like an eternity away, but it's finally arrived. 

The days are long, the years are short. Not this time. The years were long, the days were long, and sometimes mere seconds were long. 

I truly can't remember life before cancer. I remember life before I was married. I remember life before children. But I do not remember life before cancer. It becomes a part of you in a way that is difficult to explain. Pediatric cancer is everywhere and now I finally see it. Our eyes, all five of us, have been opened to cancer and they will never close. 

The length of Ellie's treatment totals 799 days. Today is day 790. Only 9 days left.

The first picture after learning of her diagnosis.