Our 1st Unexpected Hospital Visit

(This is probably the most "real time" post I have ever written.)

Ellie had to go to the hospital this afternoon. The bad news is that it was a completely unexpected visit to the ER. The good news is that it ended up only lasting about three hours, and Ellie is now at home with us. 

Yesterday, Ellie went in for her regularly scheduled visit. Check up, counts and chemo. Everything went great, and I even bragged about how her congestion was finally gone!

This morning when she woke up, she was moody and had a constant runny nose. Our niece's birthday party was this morning which, despite Ellie's condition, we attended. My first clue that she really wasn't feeling well was when she complained about being tired and wanting to take a nap at 11am. Then she felt warm, but that seemed to subside after a short time. We stayed at the party for a bit, with Ellie becoming more and more miserable. 

Licking icing off of her cookie during the party.

To be honest, I was not in a good mood either. A mother's intuition is very strong. I knew that something wasn't right with Ellie, and could not shake that feeling all morning. Finally, I decided to take her home for a nap. As I prepared to put her down for her nap, I changed her diaper and she felt warm again. So, I took her temperature.

101.2

I immediately knew this was not good. Anything over 100.4 is an immediate call to her doctor. Well, as it turns out, a temperature of 101.2 is an immediate trip to the hospital ER. After talking with her doctor, we packed a bag and headed for the hospital, anticipating an overnight stay. They ran her blood counts (which were so high!) and other series of tests. The culprit: rhino virus. Basically, a simple cold. Thank you Jesus! That, we can deal with. Since the tests confirmed rhino virus AND her counts were so high, she was given an antibiotic we were sent home after just three hours. 

Trying so hard to fall asleep in daddy's lap.

And, she's out.

Home again, home again. Jiggety-jig.

Her fever will likely continue to spike over the next few days. If it goes too high though, then we will have to make a return trip to the hospital. 

Thankfully, she will be ok. But, this was a reminder about how fragile she is. I knew that this phase was going to be hard on her. For the past 10 days Ellie has been sequestered at home, except for hospital visits. However, we are still leaving the house and bringing germs home to her. Even if none of us get sick, Ellie can still get sick. Talking with Mike just this moment, and thinking over the past week, there were a couple of days where Nora had an itchy nose and he sneezed. Neither of them were "sick", but likely still passed something along to Ellie. Any seemingly little thing can turn into a big problem for Ellie.

So...what do we do now? Well, definitely for the remainder of this treatment period, we will be much more intentional with germs and cleanliness in our home, and what we expose Ellie to. Unfortunately, Eva and Nora start school in a week and a half. I am sure that will come with it's own struggles regarding germ exposure. 

If you can, please cover our entire family in prayer now. Pray that Ellie's immune system remains strong during this heavy course of treatment. Pray that we do not expose her to any sick germs along the way.

As always, please pray for Ellie's complete and permanent healing, and for no short term or long term side effects from the medication.

Pray for a strengthened bond for our family. With our Heavenly Father and with one another. 

First Week....DONE!

If you have said a prayer on Ellie's behalf at any point this past week, thank you! Her first week back on steroids is over, and she did amazing. It was not with out it's rough moments, but it was so much better than we were anticipating, and significantly better than her first week on steroids four months ago. 

Ellie started the week with a lumbar puncture in the day hospital and chemo in the infusion center.

Waiting to check in to the day hospital.

She usually sleeps for about 2 hours after the procedure. 

Her request for when she woke up?
Pizza and a doughnut.
She ended up eating honeydew instead.

Ellie loves to help push her medicine.
Don't worry, it's just saline.

Then, the following Monday, Ellie went back for her peg drug. Oh, let me back up for a moment...

The previous Monday, when Ellie had physical therapy Eva and Nora came with us. They think PT is great fun and love to come. Since that is always a short visit, I figured that it would give me a good opportunity to give Eva and Nora a tour of Ellie's hospital. I took them to the cancer clinic and the infusion center. Everyone was more than welcoming, and so Eva and Nora were able to see all of the places Ellie visits with an explanation of what she goes through. 

If you know Eva, this was not good enough. She wanted to actually see Ellie in action. The next Monday ending up being the perfect opportunity for me to bring both girls to Ellie's visit. 

So, back to where I was...

Ellie had to go back on Monday for a peg drug. She got this when she first began treatment, but has not had it since. Within 4 days, Ellie received four different chemotherapy drugs and was on steroids. See, intense. She has handled it so well though, and I think she enjoyed having her sisters there. But I don't plan on bringing them again unless I absolutely have to.

There was a little bit of moodiness from Ellie during the week, but really is probably better defined as sensitivity.

Here she is, telling everyone in the car that they are too loud and not allowed to talk.

And, here she is wanting "some cuddles".

There were two days that she refused to take a nap, so maybe that was some of the insomnia. I'll gladly take that. When it's your third child, and they are they only one that does not nap, it's less of a hit to your day, if you know what I mean. Ellie slept through the night, every night, without problem. And, her congestion is finally gone! Praise the Lord! She has no cough, no runny nose, no watery eyes...nothing. 

For everyone out there reading this, thank you. Your prayers are helping Ellie get through this. Every day we pray for Ellie's complete and permanent healing, and for no long or short term side effects from the medicine. We are witnessing this prayer being answered. Thank you for joining with us in faith. Please continue to cover Ellie and our family in prayer as we still have a long way to go.

Delayed Intensification Road Map

Well, it's upon us. Delayed Intensification is here. This is what Ellie's treatment looks like for the next two months.

Here is what Ellie will be receiving for the next two months:
Days 1 & 29: Methotrexate via LP
Days 1-7 & 15-21: Dexamethasone given orally (steroid)
Days 1, 8, & 15: Vincristine & Doxorubicin via IV port
Day 4: Pegaspargase via IV port
Day 29: Cyclophosphamide via IV port
Days 29-42: Thioguanine given orally
Days 29-32 & 36-39: Cytarabine via IV port

So yeah, there's a lot going on these next two months. If Ellie is going to lose the rest of her hair, this is when it will happen. It will probably happen. But, the good news is that it will immediately start growing back and it probably will not fall out again. 

Here's to celebrating Delayed Intensification with a tea party!

Calm Before the (Steroids) Storm

We had a wonderful trip (differs from a vacation) to North Carolina, and were so grateful to be able to get away for a week in the midst of Ellie's treatment. Once we arrived home, the next Monday Ellie was back at the hospital to finish out her last round of chemo for this treatment period.

Technically, she has about 2 1/2 weeks off of chemo treatments before the next course of treatment begins, but we have still been back at the hospital. Last week Ellie received her 2nd dose of the IVIG (there will be 4 total). She handled everything perfectly fine, and we continue to see a slight improvement in her congestion. 

Earlier this week Ellie had physical therapy. She is so much stronger that she was, but she still seems so fragile. I really feel like she is probably recovered to 95% of where she was before her diagnosis, but she lost several months of further progress while sick. So while her gross motor skills are improving, I feel like for her, she is still a bit behind. Additionally, her chemo meds and steroids can cause joint pain and nerve ending sensitivity. This is why we are continuing with physical therapy once a month. 

Speaking of steroids, Ellie goes back on them tomorrow. This will be the first time she has been on them since the initial month of treatment. It's not quite as much as the first month where she was given them every single day, but it is still substantial. For the next 28 days, she will be a week on steroids, then a week off, then a week on, and finally a week off. 

To be honest, this next period of treatment....well, I'm not looking forward to it. It's called Delayed Intensification, and as one of her doctor's said "It is just like it sounds. It's intense." It lasts for 56 days, and Ellie will be undergoing a lot during that time. It all begins tomorrow, and I will update the blog with her road map for those next two months.

Please pray specifically for Ellie not to have any adverse side effects from the steroids. 

Pray for patience and peace for our entire family.

And please continue to pray for Ellie's complete and permanent healing.

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. 

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

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.