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. 

Tuesday, July 26, 2016

Quick Check-In

Ellie is doing well! We are doing well! 

After my last post, Ellie had a couple of minor problems that we had to deal with. The good news is that she is doing great, and her cough and congestion are mostly gone. We were able to get away to North Carolina as a family for a week, and since we've been back, I have been trying to not over schedule us anymore. This is working really well, and all three girls seem to be much happier. 

So, with that said, I have neglected the blog. I'm sorry. I have a lot to say about Ellie's recent treatments. She goes back in this Thursday to get her next round of the IVIG. That will be a long day, so I am hoping to catch up on everything then. 

In the meantime, thank you for your continued prayers for Ellie. She is about to enter a really intense phase next week that lasts for two months, so please keep the prayers coming!

Here are some recent pictures of Ellie from the past few weeks.

Enjoying the free summer movies at the theater
(from June)

She is constantly wanting me to brush her hair and put ponytails in it.
We settled on a bunch of bows.

Sound asleep on the way to NC

Friday, July 1, 2016

The cough that won't go away

The past two weeks have been busy and tiring with Ellie's treatment. She had two appointments last week, and two appointments again this week, hence the busyness.  And, she has had a terrible cough that has been waking us up at night, hence the tiredness. I feel like there has been a lot that has happened in the past two weeks, so I'll just start at the beginning.  

For the past 6 weeks, Ellie has had a cough. A terrible, phlegm filled, loud, constant cough. We don't know if it is allergies, a virus, or both. We've tried so many different things to help get rid of it, or even relieve it a bit, and nothing has helped. Certainly, waiting it out has not helped, as her little body is unable to fight off anything on its own. Her doctors told us that there is a treatment called Intravenous Immunoglobulin (IVIG) that can help give her body a "boost" so it can start to fight off infections once again.

Last Monday, Ellie went in for her chemo treatment. Before going into that visit, we had talked about giving Ellie the IVIG to help her get over her congestion. Once we arrived, it was clear that she would not be able to get it done that day, but could come back later in the week to get it. (Insurance was not willing to cover the procedure, which is apparently very expensive. Eventually, they relented.) Because of all of her congestion, there was concern that she might have had fluid in her lungs.  This meant that we got to add a chest x-ray to her visit. It ended up being clear, but just made our time at the hospital a bit longer. It was also determined that Ellie should start breathing treatments to help with her congestion and slight wheezing. 
Chillin' while being pulled to the other end of the hospital for her chest x-ray.

Waiting to be called for her x-ray.

Back at the infusion center getting her first breathing treatment.

Although Ellie tolerated the chemo very well, she did vomit in the car, and then continued once we arrived home. I really think that the vomiting was a result of her congestion, rather than nausea. She fell asleep in the car, starting coughing, and then instead of swallowing the mucus, she choked on it, which led to throwing up. Fortunately, vomiting is not something that has happened a lot, and for that I am grateful. 

We went back last Thursday for Ellie to get her IVIG. When it is administered, precautions are taken and the patient is closely monitored, as there can sometimes be an allergic reaction. Fortunately Ellie handled everything well and the drip ended up only lasting about 3 hours, instead of the anticipated 4+ hours.

Clearly, not a fan of food right now.

About to doze off for a nap...

...and she's out.

During this course of treatment, Ellie's visits are usually around 3-4 hours long. However last week, both visits were a little more involved and lasted in the 6-7 hour range. Those long days are mentally exhausting. Ellie and I are both quite spent when we come home.

This past Monday Ellie was back at the hospital, but for a very short physical therapy appointment. In this area, Ellie is doing great! I really feel like she is almost back to where she was before her diagnosis. She is running, climbing, jumping...all of the things a 2 1/2 year old should be doing. Every once in a while her balance is easily thrown off, but other than that, she is doing great. We will continue to monitor her progress, but determined that she does not need to go to PT again anytime soon. 

And finally, yesterday, we were back yet again for another chemo treatment. That part went fine. It was her visit with the doctor in the clinic before her chemo that's causing us some concern. Like I mentioned previously, Ellie has been deeply congested for six weeks. She has also had several ear infections. 3? 4? The same one that's never gone away? Her right ear is currently, red, inflamed and filled with puss. The funny thing is that Ellie has never once complained about it. Clearly it needs to be taken care of so her ear can heal, so another round of antibiotics it is. The hard thing is, we don't know if Ellie has developed a chronic ear problem, and therefore may need tubes in her ears. Or, if it just all a side effect of her weakened immune system. 
Getting her chemo drip.

Additionally, Ellie is not eating enough. Forget proper nutrition. That went out the window a long time ago. We need her to eat. Anything. And yes, we have tried it all. She seems to be in the middle of a perfect storm of not eating. She is going through chemo which is changing her taste buds, she is congested and sick, and she is 2 1/2 years old. Any one of those by themselves could cause a problem. We've been dealing with all three for six weeks. 

If you take all of this into consideration, along with other chemo side effects and how Ellie has not reacted to her ear infections, then it is quite possible that she is also having stomach/digestion pain.  She very well may be having a lot of pain from eating, but not complaining about it. All of these things together have caused quite a bit of concern for us. As of yesterday, Ellie has only lost a few ounces. So, it's far from a dire situation, but worrisome nonetheless.

Please continue to pray for Ellie and our family.

Pray for Ellie's complete and permanent healing, and for no short term or long term side effects from the medicine she is on.

Pray for Ellie's congestion and ear infection to go away. 

Pray that Ellie will regain her appetite so that we can put good, nutritious food back into her body.

Pray for strength for Mike and myself.

Pray for restful sleep for everyone. With Ellie's congestion, she regularly wakes up 3-4 times a night. Again, it's not a big thing, but it is slowly wearing on Mike and I.

Pray for patience and understanding for Eva and Nora. 

Thank you for all of your love and prayers for our family.