Monday, April 9, 2018

62 Days

I heard of this idea early on in Ellie's treatment and knew it would be great for the girls. A visual way for them to understand the length of Ellie's treatment. The only problem was, I never got around to actually doing the project with them. At first, the idea was to make links for each hospital treatment left, but that never happened. Then, I thought I would do it for the last 100 days of treatment, but I never got around to it then either, mainly because of our Houston trip. I kept waiting for the "right" time to do it, and it turns out that was today. Finally, I was motivated, the girls were engaged, and the project is now complete! We now have a visual reminder of how many days are left of Ellie's treatment. The magic number that we happened to pick: 62!

There's nothing special about this number. But, you know what? The project is finished and the girls could not be more excited! They are giddy at the thought of watching this chemo chain dwindle away. We all are. Nora's exact words were, "I'm so excited for Ellie!"

Update: While in bed last night I realized that yesterday was indeed significant. It was April 9th, which is exactly two months until Ellie's end of treatment. God was honoring my number/order-loving self, even though I didn't realize it immediately.

Monday, April 2, 2018

Two Years

It has been two years since we found out Ellie had Leukemia.

Two years of hard questions and even harder decisions.

Two years of fear and despair.

Two years of hope and love.

Two years of wondering if things will ever be "normal" again, yet at the same time knowing that our family is forever changed.

I saw this picture for the first time this week. It was taken at the very end of March 2016 while, unbeknownst to us, cancer was ravaging Ellie's body. 

Then, a year later, when everything still felt so fresh, we put the anniversary out of our minds and headed to Orlando for a family vacation.

Now, two years after this life changing news, we are nearing the end of treatment. 

As of March 2nd,  Ellie had 100 days left of treatment. That means we are well into double digit days. Ellie goes into the hospital next week for her port chemo, of which there are only 3 left. Only 3 steroid weeks left. She only has one lumbar puncture left. The big milestones are coming fast and we couldn't be more relieved. 

We wish Ellie were stronger at this point. It's frustrating to end with her looking and feeling worse than she did a year ago. Still, the hardest times seem to be behind her and she can only get stronger once treatment is over.

I heard a quote the other day that really resonated with me: "I realize now that it was not a test of Faith, but rather of Strength." 

Thank you for continuing to follow Ellie's treatment and the prayers for her and our entire family. If you are so inclined, we have set up a meal train for the remaining weeks of treatment. 

Wednesday, March 28, 2018

ER visit

Ellie is dressed like Elsa and watching “Princess Jasmine”.
Another fever popped up this afternoon, which took Ellie straight to the ER. Fortunately her counts are great, so she gets to go home. This visit will be our shortest trip to the ER yet, clocking in at under two hours.
We are continually grateful for the nurses, doctors and staff at the ER at St. Joseph’s Children’s Hospital. Most of them know Ellie by name, greet her with a smile, and work hard to get her in and (hopefully) out quickly.

The finish line is so close. We cannot wait for it to be here. We also cannot wait for the time when every little fever does NOT send Ellie to the hospital.
Thank you for your continued prayers for Ellie and our family. They mean so much to us and have helped carry us throughout these difficult times.

Saturday, March 3, 2018

99 Days

Ellie always makes sure that her Lightning jersey has some extra color.

Also, we are officially into double digits! Only 99 days left of treatment! 

Thursday, March 1, 2018

Trip to Texas

Hello from Houston!
As some of you may know, Mike, Ellie and I have traveled to Houston this week to get a second opinion on Ellie’s treatment. For the past several months, Ellie has been ill without clear explanation. While not out of the realm of possibility, her status was not normal for a child at this point in treatment. That, along with various conversations and a parent’s intuition, we decided it would be best to have a fresh pair of eyes evaluate Ellie.
At this point I feel like I should interject and say that we LOVE her doctors, nurses and staff at St. Joseph’s and think that they have done an incredible job with Ellie’s care. This is a decision we have made entirely on our own. We are her parents and ultimately are the ones responsible for her well being at this point. We haven’t been able to shake the idea of a second opinion for several weeks, and after her most recent hospitalization, it seemed like the time was right. The best outcome of this trip would also mean that we wasted time and money. We were ok with that if it meant that we gained peace and clarity. We did not want to have any regrets with her care.
Why Houston? Why not stay closer or go somewhere more well known for children? Why not All Children’s, Shand’s, St. Jude’s or (insert other pediatric oncology hospital here). Simply, we have a connection here. Ellie had her reveal for her Make A Wish trip back in December. At that time we met the gentleman that was going to generously fund her trip. While speaking with him, he told us that he was on the board for MD Anderson and gave us his card. He emphasized for us not to ever hesitate if we needed anything from him. Anything. At the time is was a kind gesture, but seemed unnecessary. Fast forward a few months and a hospital stay, and we felt it was time to take him up on his offer. While planning this trip, we also realized that we had another connection to a pediatric oncologist in Houston. The opportunity to consult with two separate doctors at two different hospitals seemed to confirm our decision to leave.
So, here we are. We have consulted with both doctors and are happy to report that all opinions are in harmony with one another. They confirmed that Ellie was getting the proper treatment, but offered ideas on future tests to run and tweaks to be made to her treatment for optimal health. We have peace, clarity and a plan as a result. We feel like this was the best possible outcome for this trip, as it allows us to return to Tampa and have Ellie continue her treatment there. After the consultations yesterday, we tried to get an earlier flight home but were unsuccessful. So we are enjoying our mini vacation with Ellie and will return home on Friday evening.
Are we crazy for doing this? Maybe. It certainly was a question we asked ourselves a lot while planning. The best way I can explain it is this: we live in a world of crazy. With pediatric cancer, we now live in the world of “that would never happen”. Because it did happen. Ellie got cancer. She is within the small percentage of children to develop cancer, and because of that, nothing seems impossible. What if Ellie were in the small percentage of leukemia patients that doesn’t respond to treatment? What if she has a rare reaction to chemo? What if she’s developed another rare disease? All of these things seem possible to us, because the impossible already happened in April of 2016.
What have we learned from this process?
Ellie is more fragile than we thought. A cold, the flu or other virus are very serious threats to her health. We may not see the changes immediately, but they are happening. Her counts have slowly dropped over the past couple of months. Her physical appearance has also changed quite a bit since last fall.
Overall, Ellie has responded extremely well to her treatment. She was the model patient for a long time, responding exactly how the doctors expected her to. Once she was no longer the model patient, once all of the changes started happening, we began to worry. Our concerns were valid and we are so glad that we had the opportunity to speak with other doctors.
We are fully aware of how fortunate we are to even have this opportunity to travel for Ellie’s care. This trip would not have happened without the help of many people. Most we know, but some we do not. To everyone that helped make this trip and these consultations possible, we are forever grateful. Our parents have been a source of constant support, never once doubting our decisions. They have encouraged us, helped us and dealt with many complex things along the way, so we can solely focus on Ellie. Thank you for your never ending help and support. We are continually blessed by your love.

Saturday, February 24, 2018

Ellie is in the hospital - #3

Sound asleep, but finally home.
Thank you for all of your prayers. Ellie’s counts went up this morning and she remained fever free for 24 hours, so she was able to go home!
To everyone that helped us over these past four days, we love you. We couldn’t get through these hard times without your help. Thank you for keeping our family strong.

Ellie is in the hospital - #2

Days 2 & 3 at the hospital have been more of the same. When you look at Ellie, she looks great! She is chatty, smiling and pretty active. In person she does not reflect the same child that you see on paper. Some of her blood counts have increased slightly since being admitted, but her ANC has gone down to 516. Unfortunately she also spiked a fever today at 1pm. The doctors would like for her to be fever free for 24 hours before they release her, and to have her counts a little stronger, if possible. So, for now, she stays at the hospital at least until tomorrow afternoon. Thank you for your prayers for Ellie!