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.

In the interest of more consistent updates, here it is: we are back at the hospital unexpectedly. Ellie has a very high fever that spiked quickly. We will update as we have answers. In the meantime, check out Ellie’s adorable new hairdo that was cut this morning.

We are crawling here, folks.

Five months left and we are crawling to the finish line.

These 26 months are our marathon, and we've hit a wall at month 21.

It's so hard for me to write. The whole process is filled with extreme highs and lows. Our news is either really exciting, due to some amazing experience we've had as the result of being a part of the pediatric cancer family, or it is really depressing and repetitious. One sounds like we are bragging and the other is just sad. How many times do people want to hear that Ellie isn't doing well? I mean, she's almost at the end, she should be getting better, right?

Not necessarily.

The only way most of you know what is going on is if I write it. By not sharing, I'm not educating about what cancer is really like for a family. Even the "good" cancer. Puke. There is no good cancer. I'm tired of pretending that just because Ellie will get through this doesn't mean that it is still hard. That is why I am writing now. Cancer treatment still controls our family and it's just as unpleasant as it was a year ago.

Ellie's body is struggling. For the first time in over a year she is on a chemo hold. Her platelets are low and the doctors won't let her continue with treatment until she rebounds. On one hand this is great news because she went a whole year in Maintenance without a hold. But on the other, it's extremely frustrating because she is so close to the end and is now having complications.

She is losing her hair again. She's not bald, but it's thin enough that we need to cut it. For all intensive purposes she will be starting over. Within the past month, Ellie has had a cold, two different strands of the flu and a respiratory infection. We were in the ER just before Christmas due to the flu, back again at the New Year and again yesterday afternoon. Three ER visits in exactly four weeks. Ellie's visit yesterday happened about two hours after we came home from her regularly scheduled treatment in the morning.

This is not going to let up until she is finished. On top of the grueling year that 2016 was for Ellie, in 2017 she received chemotherapy for 365 days. Ellie gets treatment every single day, and her body is absolutely worn out. Steroid weeks, the weeks where she goes to the hospital for extra chemo and then starts a steroid pulse, we just survive those. Nothing productive happens for anyone and life basically stops to tend to Ellie.

Ellie's wish, granted by the Make-A-Wish organization, was to see animals at the San Diego Zoo. It was supposed to happen in March, but we made the decision yesterday to postpone it until her treatment is over. It is absolutely the best decision, but it is still disappointing.

While most people have been amazing to Ellie and our family, we have been hurt by some. It's hard to not receive grace when you desperately need it most. Especially when the lack of grace and love is coming from Christians. Many months later we still have a lot of hurt feelings. The pain is still raw and the situation hard to grasp. The opposite of love is not hate, it's apathy, and we experienced that firsthand.

These are the lowest lows and we are in another low right now. To balance these out though, there are highs. In 2017...
- we took a family vacation to Orlando
- we spent time with family in North Carolina
- we met Hope at the Clearwater Marine Aquarium, complete with a behind the scenes tour
- we participated in the Children's Cancer Center Gelatin Plunge
- we visited Quantum Leap farms several times with 1Voice Foundation
- Ellie participated in a photo shoot for the CCC and Panera Bread's Scholarship Foundation
- we celebrated Eva's 9th, Nora's 6th and Ellie's 4th birthdays
- we went on a family cruise together and swam with stingrays
- we celebrated Thanksgiving in North Carolina
- we rode the Zamboni at a Lightning game

So yes, good, fun things have happened. But not without a price. The stress is debilitating at times. We are all exhausted. It's evident that all five of us just want this horrible ordeal to be over.

June 9, 2018...we are crawling to meet you.

Hello 2018! First Half

2018 has finally arrived.

Thank you Jesus!

When Ellie was diagnosed in April 2016, this new year seemed so far off. Going through these past 20 months of treatment, we felt every step of the marathon that we were living. Of course we knew in our minds that we would eventually get to this point, but at times it seemed like it would never arrive. But it has and we couldn't be more thrilled. We can now say that Ellie will be finished with treatment THIS YEAR!

With 2017 behind us, I will catch you all up on what has been going on in our lives and specifically how Ellie has been doing. I have been finding it increasingly difficult to blog because it's either depressing and sad, or it is exciting and showy. Both emotions feel too extreme to convey, so my hope is that by including it all together in one post you will get a better representation of what our year truly encompassed. Like each of you reading this, we had good days and bad days. It just feels so much more exaggerated this year. The bad days were awful and the good days were so great, we almost could forget about Ellie's cancer treatment. 

So, here we go. This was our 2017.

January

After not spending very much time together out as a family in 2016, we gently eased into the new year unsure of what Ellie would be capable of doing.

Ellie began Maintenance in December and continued with that treatment protocol throughout the entire year.

February

Little things like playing outside showed us that Ellie was regaining her strength.

We attended our first of several Lightning games and quickly became huge fans. 

We visited the circus, but Ellie refused to have her picture taken and quickly fell asleep once the show began. 

We visited Legoland with the Sunshine Kids Foundation, and it was easily one of the best days of the entire year. We will always look back at that day as a turning point in Ellie's treatment. After an extremely difficult year for Ellie, that day at Legoland showed us that normalcy would be returning to our family.

Outings are always scheduled around Ellie's treatments. After all of this fun, it was time for Ellie to go back to the hospital. Not to worry, there were cookies to decorate that day!

We threw potty training in at the end of the month. No more diapers! Then, Ellie got the flu and managed to keep it for three months. This led to three unexpected ER visits in the Spring. You get Tamiflu! You get Tamiflu! Everyone gets Tamiflu!

The iPad went everywhere with Ellie. Here, she is waiting at the pulmonologist.

March

The first of the unexpected ER visits.

Ellie requires breathing treatments almost daily, some more aggressive than others.

Back at the hospital for scheduled chemo, This visit included a lumbar puncture. 

Due to the success we had with Legoland, in March we decided to surprise the girls with a vacation to Orlando. It's hard for me to describe how much that week healed our family. It was perfect. 

April

More scheduled chemo!

Another fever which led to another ER visit.

Ellie began feeling better and decided it was time to start practicing for dance class in the fall.

May

Another unexpected ER visit.

A close up of Ellie's eyelashes growing back in.

Scheduled hospital visit. 

Ellie: "I like you. I want to be with you."

June

We were thrilled to escape to North Carolina with family for a week, even if it did end with an ER visit.

Ellie is excellent about taking her various chemo drugs and other medications.

We finally bit the bullet and took her out of her crib. 

Scheduled treatment with a lumbar puncture.

Gelatin Plunge!