Thursday, November 17, 2016


The last couple of weeks have brought more highs than lows, and for that, we are thankful.

Perhaps the only convenient thing about Ellie's treatment is that it is flexible. For the most part, her scheduled treatment can be moved a day or two if needed. Of course, we never purposefully do this (it typically only happens when treatment falls on the weekend), but at the beginning of this month we did.

Ellie was scheduled to go in for chemo the first Friday of November, but we were able to bump it up a day and a half to late Wednesday afternoon. I knew this was going to be a quick visit (quick = less than 3 hours), so I brought along Eva and Nora. Eva has been asking to come back to watch Ellie's treatment, so this seems like the best opportunity to include them again.

We love animals!

Ellie loved showing her sisters everything, especially calling in to the Infusion Center.
I am sure it makes her feel very big and important that she knows exactly what to do.

Eva and Nora both did great, despite the "short" visit. It's all exciting at first, but then the novelty wears off. Honestly, it's very boring for them. But, this is good for them to see for several reasons. They are becoming a part of Ellie's care and can better understand exactly what she is going through. Also, they see that even though going to the hospital sounds fun and exciting, it's really not. This way they hopefully will not feel like they are missing out.

So, why did we push up Ellie's visit? 

Mike and I were able to get away together for FOUR GLORIOUS NIGHTS! It was amazing! For those that know us, traveling has always been our vice. We forgo a lot of other things so that we can travel together. We had a trip planned this past May, but once Ellie was diagnosed we had to cancel. At the time her doctors assured us that we would be able to get away sometime this year, "perhaps November". So we planned a trip for the first weekend in November, with all appropriate reservations made. As the time drew close, neither one of us felt excited about it. We were nervous and stressed, and knew that we would likely be nervous and stressed if we took the trip. Always ask yourself, "What's the worst that could happen?" (Thank you, Dale Carnegie.) Well, in this scenario, the worst was Ellie ending up in the hospital for 18 hours without us. Not fair. Not fair to Ellie, to us, or to the grandparents watching her. Once we came to that conclusion, it was an easy decision to cancel our plans and make new ones. 

Vacation qualifications: no more than a three hour drive from Ellie. So this is what we did. We stayed in Orlando for two nights, and Cedar Key for two nights. Constantly evaluating along the way if we needed to come home...and we never did. Nana and Grandpa, thank you for watching Ellie. Mimi and Papa, thank you for watching Eva and Nora. Those four nights away allowed us to rest and refresh in ways we didn't fully realize. Thank you for the quiet and peace you allowed us those days. 

Looks like Ellie also enjoyed the peace and quiet while we were away.

The days after we returned home were some of the best Ellie has had recently. Because of the early push for the prior chemo treatment, she was given a few extra days of rest before going back in for the next round.

Cutest doctor I've ever seen!

(I texted this picture to Mike.)
Me: Apparently licking the cheese is enough.
Mike: She's absorbing it.
(Then, after a few minutes of licking...)
Me: Ellie, take a bite.
Ellie: Oh, no, no, no. Let's don't do that.

This past Monday, Ellie was back at the hospital for more treatment. Harsh treatment. She's had this before, and it wasn't good to her. Last time she ended up being hospitalized for a couple of days, receiving transfusions while her little body recovered. And this dose was going to be more than the prior dose. Methotrexate into her spinal fluid via a lumbar puncture, plus Methotrexate and Vincristine administered into her port.

At the clinic before heading to the day hospital for her procedure.

With each of the recent treatments, she has had to make counts. I am happy to report that Ellie's numbers have been so high! This is a wonderful praise because it lessens her chances of needing a transfusion.

In the day hospital after waking up from her LP.
She wanted me to lie in bed with her. How could I refuse that?

Back at the Infusion Center for more chemo.
She wanted me close.

Ellie did great with the treatment, so now we wait. I'd be lying if I didn't say that we were waiting for her to need to go back for a transfusion. You might think we are being pessimistic, but I think we are being realistic. It's much easier to take if we know it's going to happen. Still, we pray for lessened side effects, and so far we have witnessed just that. Ellie has complained a little about pain in her legs, stomach, fingers, and she has barely eaten anything the past two days...but...that's it. Oh, there's been a little bit of insomnia. One night she woke up at 11:30, then again at 1:30am asking "Can I read books and you tell me when it's time to get up?" But these are really minor inconveniences. Her side effects could be so much worse. So if you have been praying for Ellie, thank you. Your prayers are being heard and answered. 

As we leave the hospital, Ellie always peeks into the offices to see if she can find anyone to talk to.
Today, Ellie woke up in a very different mood. She was irritable, clingy, fussy, and did not want to eat at all. As this chemo wrecks her body, she feels terrible. We are watching her closely, looking for bruising and elevated body temperature. Please pray that she feels better and does not need another transfusion. Ellie only has one more round of chemo until she begins the Maintenance phase of treatment. She still has a long way to go, but this will be a HUGE milestone for certain. We know that she can do it!

Having rainbow fingernails and toenails doesn't hurt. 

Thank you so much for your continued love, prayer and support for our family. This has been a very long process so far, and yet, we still have even more to go. Thank you for hanging in there with us.


  1. Praying for healing your beautiful baby girl! Glad you and Mike were able to get away for a few days. Thanks for posting. I look forward to seeing Ellie back at church when she is better. Debbie S

  2. Thank you so much Debi! We miss seeing everyone, but we know that this is best for Ellie right now. Thank you for your prayers.