Sunday, February 11, 2018

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.

Thursday, February 8, 2018

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.

Tuesday, February 6, 2018

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.

Monday, January 22, 2018

In the interest of more consistent updates, here it is: we are back at the hospital unexpectedly. Ellie has a very high fever that spiked quickly. We will update as we have answers. In the meantime, check out Ellie’s adorable new hairdo that was cut this morning.

Wednesday, January 17, 2018

We are crawling here, folks.

Five months left and we are crawling to the finish line.

These 26 months are our marathon, and we've hit a wall at month 21.

It's so hard for me to write. The whole process is filled with extreme highs and lows. Our news is either really exciting, due to some amazing experience we've had as the result of being a part of the pediatric cancer family, or it is really depressing and repetitious. One sounds like we are bragging and the other is just sad. How many times do people want to hear that Ellie isn't doing well? I mean, she's almost at the end, she should be getting better, right?

Not necessarily.

The only way most of you know what is going on is if I write it. By not sharing, I'm not educating about what cancer is really like for a family. Even the "good" cancer. Puke. There is no good cancer. I'm tired of pretending that just because Ellie will get through this doesn't mean that it is still hard. That is why I am writing now. Cancer treatment still controls our family and it's just as unpleasant as it was a year ago.

Ellie's body is struggling. For the first time in over a year she is on a chemo hold. Her platelets are low and the doctors won't let her continue with treatment until she rebounds. On one hand this is great news because she went a whole year in Maintenance without a hold. But on the other, it's extremely frustrating because she is so close to the end and is now having complications.

She is losing her hair again. She's not bald, but it's thin enough that we need to cut it. For all intensive purposes she will be starting over. Within the past month, Ellie has had a cold, two different strands of the flu and a respiratory infection. We were in the ER just before Christmas due to the flu, back again at the New Year and again yesterday afternoon. Three ER visits in exactly four weeks. Ellie's visit yesterday happened about two hours after we came home from her regularly scheduled treatment in the morning.

This is not going to let up until she is finished. On top of the grueling year that 2016 was for Ellie, in 2017 she received chemotherapy for 365 days. Ellie gets treatment every single day, and her body is absolutely worn out. Steroid weeks, the weeks where she goes to the hospital for extra chemo and then starts a steroid pulse, we just survive those. Nothing productive happens for anyone and life basically stops to tend to Ellie.

Ellie's wish, granted by the Make-A-Wish organization, was to see animals at the San Diego Zoo. It was supposed to happen in March, but we made the decision yesterday to postpone it until her treatment is over. It is absolutely the best decision, but it is still disappointing.

While most people have been amazing to Ellie and our family, we have been hurt by some. It's hard to not receive grace when you desperately need it most. Especially when the lack of grace and love is coming from Christians. Many months later we still have a lot of hurt feelings. The pain is still raw and the situation hard to grasp. The opposite of love is not hate, it's apathy, and we experienced that firsthand.

These are the lowest lows and we are in another low right now. To balance these out though, there are highs. In 2017...
- we took a family vacation to Orlando
- we spent time with family in North Carolina
- we met Hope at the Clearwater Marine Aquarium, complete with a behind the scenes tour
- we participated in the Children's Cancer Center Gelatin Plunge
- we visited Quantum Leap farms several times with 1Voice Foundation
- Ellie participated in a photo shoot for the CCC and Panera Bread's Scholarship Foundation
- we celebrated Eva's 9th, Nora's 6th and Ellie's 4th birthdays
- we went on a family cruise together and swam with stingrays
- we celebrated Thanksgiving in North Carolina
- we rode the Zamboni at a Lightning game

So yes, good, fun things have happened. But not without a price. The stress is debilitating at times. We are all exhausted. It's evident that all five of us just want this horrible ordeal to be over.

June 9, 2018...we are crawling to meet you.

Monday, December 18, 2017

ER visit

A fever has sent Ellie to the ER this afternoon. We are waiting for test results now, hoping it’s not anything serious.

Thursday, October 26, 2017

Ellie is tired

Ellie receives chemo every day at home. She receives another chemo drug every Tuesday at home. She gets an antibiotic every weekend. We have an entire arsenal of other medicines to give her to counteract side effects of her drugs. Every four weeks she goes to the hospital for another chemo drug given through her port. (Every third hospital visit she receives yet another chemo drug via a lumbar puncture into her spinal fluid.) Every time a hospital visit occurs, she begins a five day pulse of steroids. Those weeks are always very difficult for Ellie.
We are in one of those weeks right now. Her body is so tired. It is hard to get a 4 year old to slow down. These weeks are filled with power struggles and mood swings. Yesterday was terrible. Today, I have embraced the cuddling and already she is calmer. As a result of forcing her to calm down, she ended up falling asleep at 9:30am.
Overall, Ellie is in a good place considering her diagnosis. But that doesn’t mean that it still isn’t hard. The countdown is definitely on. Only 7-8 more months of treatments, which means only 7-8 more weeks like this.
Thank you for your continued prayers for Ellie and our family.