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.