Ellie is in the hospital - #3

Sound asleep, but finally home.

Thank you for all of your prayers. Ellie’s counts went up this morning and she remained fever free for 24 hours, so she was able to go home!

To everyone that helped us over these past four days, we love you. We couldn’t get through these hard times without your help. Thank you for keeping our family strong.

Ellie is in the hospital - #2

Days 2 & 3 at the hospital have been more of the same. When you look at Ellie, she looks great! She is chatty, smiling and pretty active. In person she does not reflect the same child that you see on paper. Some of her blood counts have increased slightly since being admitted, but her ANC has gone down to 516. Unfortunately she also spiked a fever today at 1pm. The doctors would like for her to be fever free for 24 hours before they release her, and to have her counts a little stronger, if possible. So, for now, she stays at the hospital at least until tomorrow afternoon. Thank you for your prayers for Ellie!

Ellie is in the hospital

Since Monday, Ellie has been having fairly consistent fevers. It’s not the flu this time, but it is a cold and it’s a possibility that she’s recently had mono as well. A routine follow up appointment with her pulmonologist today turned into a suspicion of pneumonia. Ellie was sent to the hospital for an X-ray and then the cancer clinic for a check up. After much consultation, it was determined that Ellie probably has viral pneumonia, but the doctor wasn’t entirely ruling out bacterial pneumonia. Still, Ellie was looking good and acting well so it was decided that she could be treated at home with a strong antibiotic.

Then she spiked another fever. To the hospital she goes.

Ellie was admitted to the oncology around 5pm today. She is currently being treated for pneumonia, but we still have a lot of questions about these fevers that she keeps having. Her platelets were at 35 on Monday, and today are down to 25. This is the lowest they’ve been since 2016, and she is reaching the point of possibly needing a transfusion.

Tonight we rest and wait. We feel secure knowing that Ellie is exactly where she needs to be. Sometimes the uncertainty is the worst part. It’s easier now that the decision has been made to stay at the hospital, and hopefully we can get some answers. Prayerfully, Ellie will receive healing.

In your prayers for Ellie, please say one for the rest of our family. Eva had a cold last week and now Ellie and I have the same cold. Pray that we are healed and that Mike and Nora remain healthy. Thank you. 

Oh, and can I just say that Ellie’s insistence on having “rainbow toes” is one of my favorite things.

Another chemo hold. Another flu?

The past week has been mentally and emotionally draining, and to be honest I don't think Mike and I have felt this stressed since 2016. While things have calmed down, we still don't feel like we have all of the answers. It was difficult to talk about everything going on with Ellie, and while it is still tiring, I wanted to update everyone about what has been happening. 

Ellie went in to the hospital last Tuesday for her lumbar puncture and port accessed chemo. While at her clinic visit before the procedures her doctor told us that she wanted to also perform a bone marrow aspiration on Ellie. This test would be able to give the doctors insight into what was going on with Ellie's body. This caused a lot of anxiety because this test is also used to determine of there is (a relapse of) leukemia. Ellie has not had this test done since April 2016 when she was first diagnosed. The preliminary results were good: no signs of leukemia. This was a relief to hear, but we were still worried until we received the full and final results on Friday and today: no leukemia.

In addition to the stress of this test, Ellie's last viral panel from her previous ER visit came back negative. On one hand that is great news because that means no flu! But, on the other hand, we have no source for her most recent fevers, and that is extremely concerning.

 

Her nurses always make sure Diddy and Lamby are waiting for her when she wakes up.

Like I have said before, we firmly believe that Ellie will be fine, but what else will she have to go through until she reaches that point? We hope for the best, but this past week it felt like we were preparing for the worst. Still, we are thankful that God has continued to allow Ellie's body to heal. 

At the hospital that day it was determined that Ellie's daily and weekly chemo doses would be greatly reduced. She was at 125% dosage and that was dropped to 50%. It is clear that Ellie's body is no longer tolerating the chemo, so we were hopeful that this would help.

After coming home from a long day at the hospital, Ellie spiked another fever late that afternoon. Sigh. I can't make this up. By the grace of God, with some quick efforts to cool off Ellie's body, the fever gradually went away. Ellie remained fever free all week, but still, you could tell she was miserable. The double dose of chemo, plus steroids, plus the bone marrow aspiration in her hip made her extremely tired and sore all week. 

Her lambs are ALWAYS with her.

Another side effect of the steroids is nervous picking. During steroids weeks Ellie is constantly picking at her lambs (some areas are threadbare), her clothes or herself (lips and fingers).

So, Ellie went for a long time without a fever...until today. Another fever spike, another unexpected hospital visit. More tests and hopefully some answers. Although Ellie's previous tests showed no signs of the flu, today she is extremely congested, so the flu may be back. As of writing this post, we are still waiting on all test results from today. One current thought is that perhaps Ellie has mono. That certainly would help to explain a lot. 

Ellie's ANC was fine so she was able to leave the hospital after a couple of hours. But, her platelets have dropped again, down to 35, so she is on yet another chemo hold. We are home and that is always better than being at the hospital, but the past few weeks have certainly taken their toll on Ellie. She can tell when I'm getting ready to go to the hospital, and every recent time, she has started crying. This little girl is done.

Please continue to pray for Ellie's complete and permanent healing. Thank you for continuing to come alongside our family during this time.

Update: As I was about to hit "Publish", we found out that Ellie does have a cold, but not the flu.

More Fevers

Since Ellie's last ER visit, just a few days ago, she has had a difficult time shaking her fever. While not necessarily a problem, it is unusual for her. Usually when she spikes a fever, we go to the ER, get her treated, go home, and she may spike another fever within the next 24 hours, but that's it. This time the fever is hanging on and causing a lot of discomfort. Ellie has been drinking, but not eating. She is not responding well to Tylenol and is not really able to take Motrin. However after much consideration with her doctor, we finally gave it to her and that helped the fever tremendously. She is complaining of pain far more often than usual. Pain in her mouth, her legs and her port. Pain everywhere.

Last night the fever reared its ugly head again. At 3am Ellie woke up to use the restroom and her little body was on fire. We called her doctor and headed to the ER yet again.

What happens when Ellie goes to the ER? Well, we call the doctor through the on call service. Once it's determined that it is urgent enough for Ellie to be seen, we grab our bag (it's always packed) and head to the hospital. The oncology doctors are amazing and they always call ahead to notify the ER that Ellie is on the way. Once we arrive and sign in, we've never waited more than 15 minutes before heading back to a room. At this point, most people recognize Ellie and are quick to help. First up is port access and then blood draws. They run a CBC (complete blood count), collect blood cultures to determine if there is any infection in her blood and get a nasal swab to check for flu and run a viral panel. The CBC and flu results are usually within an hour, while the blood cultures take several days. Ellie is then given a dose of Rocephin, an antibiotic used to treat a wide range of infections. At this point Ellie is given fluids if needed, sometimes requested to give a urine sample, often sent for a chest x-ray and almost always given Tylenol. In order to not mask or misrepresent a fever, Ellie is not given Tylenol until she is under the provision of the antibiotic. As long as everything looks ok with her counts, her port is de-accessed and Ellie is sent home. We are then in close contact with her doctors, following up on any changes.

Last night Ellie was in and out of the ER in record time. Apparently not many people travel to the ER at 4am. I can't imagine why not? Ellie's chest x-ray showed some inflammation, but no signs of pneumonia. Her fever managed to go down on it's own, and her blood counts were good, although her platelets are dropping again. Still, all good reason for Ellie to be discharged and sent home. 

Fast asleep while waiting to be discharged.

To be honest, these past few days have had us a bit worried, simply because Ellie is not reacting the way she usually does to a fever. And that is one of the great stressors of cancer treatment: nothing is "usual". I have this constant feeling that everything could turn on a dime and that is where the stress lies. Even though we know Ellie will be ok, what does Ellie have to go through to get there? Even if Ellie is ok, what if she's not? 

We never want to go to the hospital unexpectedly. From the outside, I'm sure everything seems so simple. But what if this is the one time that it isn't? And that is why we have never once regretted taking her to the ER no matter the time of day or night.

Ellie still has a fever, is complaining of pain, and still not wanting to eat. A benefit of last night's visit is that her CBC showed us that her platelets have once again dropped. After being on her chemo hold, her platelets continued to climb. She began chemo again this past Tuesday, and since then they have started dropping. On Thursday at the ER they were at 96, and last night at 59. If they reach below 50, then Ellie goes on another chemo hold. 

Tuesday is a big day. Ellie is supposed to get two doses of chemo at the hospital, one through her port and another into her spinal fluid via a lumbar puncture. From what we understand, these treatments will likely happen no matter what, but she could end up on a hold from her daily chemo. While nothing new to her, we are concerned that Ellie may end up needing more blood transfusions in the future. 

We struggle with sharing these intimate moments in Ellie's life. I constantly worry about how she will feel when she is older, knowing that this was shared with so many people. This is why I stopped sharing for much of 2017. However, we've come to realize that so many people assumed that since she was near the end of treatment, it was now easy for her. I assure you that this is not the case, and that is why I am sharing so much more frequently now. Everyone has their "thing"; that passion they wish to share with the world. Ours is now pediatric cancer. It is a terrible experience for any child to go through, and the horrors are minimized when the truth is not shown. Whether it's our family or another pediatric cancer family, whether they choose to share the details or keep them quiet, I guarantee that they need your help more than they are willing to let on. 

Many of you have asked how you can help. Food and gift cards for food are amazing gifts! It sounds simple, but it really is an easy, practical way to help. We have had many people ask about caring for Eva and Nora, and while that is extremely generous it is not a huge need. Since we homeschool full time, we are used to being home a lot. Our schedule was greatly simplified this school year, so all of the girls are able to maintain a normal schedule with little interruption for Ellie's treatments. 

Please pray that whatever is causing this fever is only viral, and if its indeed bacterial, then it will quickly heal. Please continue to pray for the rest of our family to remain healthy. Please continue to pray for Ellie's complete and permanent healing. Thank you for following along and praying for Ellie.

Another fever. Another ER visit.

It feels like we are going through the fire today. We experienced a mild flooding in both bathrooms today, and now a fever. The former is definitely a first world problem and while we are annoyed, we are mostly able to laugh it off.

Fevers though, they always bring a feeling of uncertainty. Ultimately, we place Ellie in the Lord’s hands. After all, she is not ours. She is His. But man is it still hard.

Please pray that Ellie recovers from whatever is causing the fever (probably the flu, again), and that the rest of us stay healthy.

Asleep in my lap while waiting to hear back from the doctor.

No More Holds

We were back at the hospital today and Ellie is officially off her chemo hold. The past couple of weeks have been filled with some downs, but it looks like she finally may have turned the corner towards improvement. 

After Ellie's initial platelet drop she was put on a chemo hold for two weeks. When we went back last week to get her blood counts checked again there was good news and bad news. The good news was that her platelets had dramatically improved from 42 to over 160. The bad news was that her neutrophils plummeted, giving her and ANC of <500 which made her neutropenic and continued the chemo hold.

At the hospital with her sisters where everyone got knitted hats/headbands.

Ellie's hair seems to have stopped falling out, but unfortunately the brown spots/scabs on her head are still there. It can be a common side effect of chemotherapy, but it is one that we have not dealt with until now.

In addition to these brown spots, Ellie has developed an unusual rash that is covering her head, face and the top part of her chest. To be honest, it is stumping the doctors. It could be viral, a side effect of going off chemo, skin irritation or heat rash. These were some of the probable causes that we threw out during our discussion with her doctors this morning. They agree that it is nothing serious, and honestly it does not seem to be bothering Ellie too much. We see her rubbing them sometimes, but will only complain about it if asked. Just like most of her pain. Ellie really is amazing at handling everything that she is going through. We can tell when she is hurting, but she rarely verbalizes it. Like any other side effect we are keeping a close eye on it. Ellie goes back to the hospital next week for treatment and if it is still an issue, then she will be referred to a dermatologist.

This picture was taken several days ago.
Sadly, now it is much worse, but you can still get an idea of how they look.

Due to the persistent flu that Ellie has had over the past 5-6 weeks, she went into the hospital today for an additional treatment. To be clear, the flu does not affect Ellie the way you might think. She seems to spike a fever for about 36 hours (which during that time includes a visit to the ER) and then that's it. No other serious symptoms that we have seen. So while we are grateful that it has not adversely affected her, it is still an annoyance. 

After discussing with her doctors, we decided to try another round of an IVIG. She has had this treatment before so it was something that we were familiar with. If I am relaying this correctly, it is a protein that is added to her blood to help boost her immune system. We are hopeful that it will help Ellie's immune system recover. It is a somewhat lengthy treatment at 3-4 hours, but she was still in and out in one day with a total stay of 8 hours.

I managed to sneak this picture...

...but Ellie made it very clear that she only wanted Diddy and Lamby in the picture.

Ellie and Diddy with their "best ports ever".

Ellie is very considerate to her lambs, making sure that they can see the movies too.

So, this is where Ellie is currently at: recovering from the flu, boosting her immune system, no longer losing her hair, yet covered in an unidentifiable rash. This is progress. One of her nurse practitioners will no longer let me say that we are crawling. We are going to get back up and run to that finish line. So here we are, as a family, getting up and helping Ellie run the rest of this race. 

And you are helping us get back up. 

I would be remiss if I did not mention all of the people that have come to our aid in so many ways over the past two weeks. Thank you. So many people reached out to us, and honestly, I have not had the chance to respond to everyone yet. You have prayed, sent meals, heard our struggles, carpooled with our children, sent awesome encouragement posters, bought coffee and breakfast for all, sent entertaining gifts of love...I could go on. Thank you for the boost you gave our family when we desperately needed it. 

Next Tuesday Ellie goes in for her next treatment. She only has 5 hospital chemo treatments left. Five! You can count that on one hand! She is so, so close to being done. The next treatment is a big one as it includes a lumbar puncture, but even then she only has two of those left. The end is drawing near and the light at the end of this dark, terrible tunnel is finally getting brighter.

Thank you for your continued prayers for Ellie and our family. We appreciate your love and support.