Thursday, July 28, 2016

Vacation Uncertainty

After my last lengthy post, Ellie's congestion continued without any real improvement. She was not having a wet cough quite as much, but she was sneezing and having a runny nose. On Friday, July 8th, Ellie went in for her clinic check up and chemo treatment. After looking her over, several of the doctors and nurses became concerned with her continued congestion. So much so, that we were told to follow up with a pulmonologist as soon as possible, and that it was likely she would not be able to get her lumbar puncture that day. It would be up to the discretion of the anesthesiologist whether or not he felt comfortable sedating her with that much congestion in her body. If he said no, then we would have to come back the following week for the lumbar puncture.

Normally, this would just be an annoyance due to the extra appointments and delayed treatment. But, on that day, this news was particularly upsetting. We had planned to leave on Saturday, July 9th for a family vacation to North Carolina. If Ellie did not get her LP that day, and see a pulmonologist, it was likely that we would have to change our plans. Not wanting to disappoint Eva and Nora, Mike and I ran through several scenarios, with the likely winner being that he would take the older girls, and I would stay at home with Ellie.

After Ellie's clinic visit, we went to the day hospital to check her in for the procedure and meet with the anesthesiologist. He listed to her and all I remember was "...we should probably go ahead and wait until next week." Or, something along those lines. I was so disappointed and immediately started crying. After quickly regaining my composure, I explained our situation to him, to which he responded that he could definitely still do the LP that day, he just felt it would be the best situation to wait a few days.

Let me be perfectly clear. We would have never let him put Ellie under anesthesia if he did not think it would be ok. And he would not have done it either. I could tell that he was a doctor that had done this for many, many years. Mike & I trusted him completely when he gave us the go ahead. 

With one hurdle out of the way, all we had left was to see the pulmonologist. I don't know who pulled the strings, but we met with a pediatric pulmonologist in the day hospital that afternoon while Ellie was taking a nap. He was able to listen to her, prescribe an antibiotic to help, and we have a follow up appointment in a few weeks. 

Many, many wonderful people saw and helped Ellie that day. For many reasons, I think it is a day that I will not soon forget. After much talking with Ellie's doctors, it was decided that Ellie would be fine to leave. As Dr. Mogul said, "Family vacations are important." We were given the name and number of a doctor to visit at a pediatric cancer hospital just an hour away from us if there were any problems. Fortunately, we never had to call!

On a side note, everyone that has seen Ellie has been excellent! We are so grateful for every single nurse and doctor that has taken her into their care. I could go on and on about many of them, and maybe one day I will. But, for now, please read this article about Dr. Mogul. This is a great example of the level of care that Ellie is receiving from everyone that she comes into contact with at St. Joseph's. 

Back to our story...once Ellie woke up from her nap, we still had to go to the infusion center for her to receive more chemo. It was a long hospital day. By the end of the day though, things were definitely looking up. Ellie was able to receive all of her treatments, we were given the all clear to go on vacation, and Ellie ate ice cream!

It has been so hard to get her to eat. And most fattening, kid happy foods are sweet. Ellie had not been eating anything sweet. So, the fact that she ate, and finished, an ice cream cup was big excitement! 

Me: "Ellie, what can I get you to eat? You can have anything you want."
Ellie: "Nothing. I want nothing."

This is a conversation that we have had often in the past few weeks. You can understand why we were so excited about the ice cream.

On to North Carolina!

We had a wonderful trip with each other and Mike's parents. Ellie did great the entire time, and never once did she give us anything to worry about. It was wonderful to be able to enjoy a short break during her treatment. 

Ha ha! I love this picture!

Whew! That's all I have time to write about for now, but I still have more to share about Ellie. I will do my best to write again soon.

Thank you so much for your continued prayers for Ellie and our entire family. 

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