Thursday, March 1, 2018

Trip to Texas

Hello from Houston!
As some of you may know, Mike, Ellie and I have traveled to Houston this week to get a second opinion on Ellie’s treatment. For the past several months, Ellie has been ill without clear explanation. While not out of the realm of possibility, her status was not normal for a child at this point in treatment. That, along with various conversations and a parent’s intuition, we decided it would be best to have a fresh pair of eyes evaluate Ellie.
At this point I feel like I should interject and say that we LOVE her doctors, nurses and staff at St. Joseph’s and think that they have done an incredible job with Ellie’s care. This is a decision we have made entirely on our own. We are her parents and ultimately are the ones responsible for her well being at this point. We haven’t been able to shake the idea of a second opinion for several weeks, and after her most recent hospitalization, it seemed like the time was right. The best outcome of this trip would also mean that we wasted time and money. We were ok with that if it meant that we gained peace and clarity. We did not want to have any regrets with her care.
Why Houston? Why not stay closer or go somewhere more well known for children? Why not All Children’s, Shand’s, St. Jude’s or (insert other pediatric oncology hospital here). Simply, we have a connection here. Ellie had her reveal for her Make A Wish trip back in December. At that time we met the gentleman that was going to generously fund her trip. While speaking with him, he told us that he was on the board for MD Anderson and gave us his card. He emphasized for us not to ever hesitate if we needed anything from him. Anything. At the time is was a kind gesture, but seemed unnecessary. Fast forward a few months and a hospital stay, and we felt it was time to take him up on his offer. While planning this trip, we also realized that we had another connection to a pediatric oncologist in Houston. The opportunity to consult with two separate doctors at two different hospitals seemed to confirm our decision to leave.
So, here we are. We have consulted with both doctors and are happy to report that all opinions are in harmony with one another. They confirmed that Ellie was getting the proper treatment, but offered ideas on future tests to run and tweaks to be made to her treatment for optimal health. We have peace, clarity and a plan as a result. We feel like this was the best possible outcome for this trip, as it allows us to return to Tampa and have Ellie continue her treatment there. After the consultations yesterday, we tried to get an earlier flight home but were unsuccessful. So we are enjoying our mini vacation with Ellie and will return home on Friday evening.
Are we crazy for doing this? Maybe. It certainly was a question we asked ourselves a lot while planning. The best way I can explain it is this: we live in a world of crazy. With pediatric cancer, we now live in the world of “that would never happen”. Because it did happen. Ellie got cancer. She is within the small percentage of children to develop cancer, and because of that, nothing seems impossible. What if Ellie were in the small percentage of leukemia patients that doesn’t respond to treatment? What if she has a rare reaction to chemo? What if she’s developed another rare disease? All of these things seem possible to us, because the impossible already happened in April of 2016.
What have we learned from this process?
Ellie is more fragile than we thought. A cold, the flu or other virus are very serious threats to her health. We may not see the changes immediately, but they are happening. Her counts have slowly dropped over the past couple of months. Her physical appearance has also changed quite a bit since last fall.
Overall, Ellie has responded extremely well to her treatment. She was the model patient for a long time, responding exactly how the doctors expected her to. Once she was no longer the model patient, once all of the changes started happening, we began to worry. Our concerns were valid and we are so glad that we had the opportunity to speak with other doctors.
We are fully aware of how fortunate we are to even have this opportunity to travel for Ellie’s care. This trip would not have happened without the help of many people. Most we know, but some we do not. To everyone that helped make this trip and these consultations possible, we are forever grateful. Our parents have been a source of constant support, never once doubting our decisions. They have encouraged us, helped us and dealt with many complex things along the way, so we can solely focus on Ellie. Thank you for your never ending help and support. We are continually blessed by your love.

Saturday, February 24, 2018

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!

Wednesday, February 21, 2018

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.

Monday, February 19, 2018

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.

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.