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.


  1. Dear York family, I promise to pray for all those things you have mentioned for Ellie!! You all are such a wonderful and precious family and your faith is strong. Love you guys, Debi
    PS I finally was able to get onto your blog :)

  2. Yay! Thank you so much for your prayers Debi.

  3. Just checking in to see how Ellie is doing. Praying that things are either doing wonderful or stable. Miss see you all but totally understandable. Prayers and sending hugs to all.