June 30, 2015

Update from Joe:

Ella’s ANC is 1750, so round 2 of chemo has begun. She will have chemo all week. Monday-Wednesday, we’ll be in clinic, then we will be admitted on Thursday for the chemo (two days). 

Ella is back to her fighting weight again! Doctor says that this is the same weight as when she began. All good things. Ella will hopefully breeze through this round without complication. Her oncologist has slightly reduced her chemo dose because she was neutropenic so long last month. He’s hoping to minimize the time that she is neutropenic to try and keep her from infections. 

Ella is scheduled for an MRI on July 20 to see if we’ve made progress. If things look better, we are talking about starting radiation early. Not sure if a few months early will matter because radiation to the brain may be devastating either way. If the MRI isn’t what we want, we may have to press on with chemo of some sort. I, more than Sarah, want to start radiation early. Every additional dose of chemo scares me. When Ella’s immune system is gone, she is at risk of infections and complications, all of which can be life threatening. We isolate her for good reason, but can’t wait for Ella to live the life of a semi-normal toddler. We live in total fear of complications, but know that God has a plan for Ella and we will go along with it! 

This next month will be very telling of where Ella’s journey takes us next. We pray that God leads Ella to cure, health, and happiness. 

   
    
 
 
   

    
   

June 23, 2015

Ella had clinic today. Her ANC is 2890, (awesome!) and her platelets (74) and hemoglobin (10.9) are in good shape, too! This is a good sign of recovery, and the numbers went up much quicker than expected. If they stay up, the next round of chemo should start Monday. 

Also, there are 7 days left to purchase shirts. You can get one here!

   
   

June 20, 2015

The early part of the week was tough for Ella, but she’s been doing much better. 

On Sunday, we realized Ella’s belly pain was due to an intussusception – when the intestine “telescopes” on itself.  Luckily, no intervention (particularly surgery) was needed, and we just have to wait for it to correct on its own. It is a small bowel to small bowel intussusception, which is best. If it were small bowel to large bowel, they’d intervene. And, since Ella didn’t spike any more fevers, they got to return home Monday.

Ella quickly lost her hair and is back to rocking the smooth noggin. She saw herself in the mirror before it all completely came out and started laughing saying, “I have crazy hair!” It got to be too messy, so they buzzed her head. Ella kept saying “I look cute! You shaved my head!” She, of course, is looking pretty adorable. 

Ella and co. Made some new friends at clinic yesterday. As a part of the super awesome Big Slick in Kansas City, Missi Pyle, Martin Starr, Kevin Rahm, and Johnny Knoxville stopped by her room to say hello. It’s great that these guys take time to get to know the patients and their families and raise money for Children’s Mercy! 

Finally, more shirts are available for purchase here as a way to help Ella crush cancer! Get yours or click on the Donate section above to show your support! 

   
     

   
 

June 14, 2015

Ella is back in the hospital. After running a 101.3 fever all afternoon yesterday, they were admitted to the hospital last night. They’re looking at her blood cultures, so it’ll be about another 36 hours before we know more.  

Ella has also been having some belly pains this week (we assume cramping) and hasn’t been eating much. She’s feeling pretty miserable. We are hoping this will end when her blood counts come up. Her pains could be a side effect of the chemo called mucositis. (It’s basically an inflammation of the gut causing cramping and diarrhea. Not fun). She also received a bag of platelets in clinic Friday. Her ANC is still zero. Hoping for an improvement by mid-end of this week!

   
     

   

  

  

  

June 9, 2015

Ella and co. are home from the hospital! Ella’s ANC is 30, so she is on her way to zero. She’ll get her Neulasta shot tomorrow in clinic and then they’ll wait for counts to rebound. 

In addition to fighting cancer, SuperElla is now fighting crime. “I’m here to save the day!” she yells in her new costume from Erin Currier. (Well done, Erin)! She loves it! 

Fun fact: Ella’s new favorite flick is Despicable Me. 

   
     

   
     

June 7, 2015

Ella and co. were discharged from the hospital yesterday after Ella finished her chemo. Unfortunately, Ella spiked a fever around 8:30 last night and they had to go to the ER. Once in the ER, Ella’s fever vanished. She was admitted back to the oncology floor where she spent the night (though they didn’t get to their room until about 1:30 am). And, another fever spiked early this morning (101.7F). Not surprisingly, Ella is beat.

She’ll be confined to her room until she is fever-free for 24 hours, and they’ll be OK to leave after 48 hours (hospital policy). This assumes she won’t get another fever and nothing grows in her blood cultures. (The doctors draw blood cultures anytime she gets a fever to see if there is bacteria in her blood that could be causing the fever. If so, they can target it with antibiotics. She is on a broad-spectrum antibiotic to cover just about anything). Ella still seems to be running hot and could potentially spike another fever. So, she’ll hang tough in her room for now. As you can see in this video from a few days ago, she refuses to let anything get her down!

June 1, 2015

Today’s update, from Joe:

Had a rough day yesterday. After some vomiting and Ella complaining that her head hurt, we spent the afternoon in the ER and got a CT scan of Ella’s head. The scan showed nothing abnormal, which is good. They were looking to see if her brain had fluid that might’ve been causing pressure, and would therefore explain  the vomiting and discomfort. In this case, no news is good news. Dr. Ginn explained that it could possibly be a result of one of the tumors just being in a certain spot and is causing a headache and nausea. If it is a tumor, hopefully the chemo will shrink it and get rid of it. (The current tumors are really small and are called tumor “seeding”).

We got home last night and gave Ella nausea medication to see if it would help with the random vomiting. It seemed to help because she pounded a bunch of food which she hadn’t done in a few days. We gave her additional nausea medication this morning. She is eating and seems to be doing better. Today, Ella mentioned that her head hurt, but we’re not sure if she just feels nauseous or if it’s actual pain. As long as it doesn’t progress and get worse, Ella should be good.

So, Ella is sleeping off her dose of IV Benadryl that she got as a premedication just in case of nausea. She did well getting her port accessed (poked with a big needle that will stay in for the week), and she is currently getting her 4 hour infusion of chemo. We are keeping our fingers crossed that Ella has a great week and that the vomiting stops and that she’ll have no more complaints of pain.

Dr. Ginn said that the plan is to give her 4 rounds of this chemo — if she can tolerate it — and then move to radiation in October/November. Once Ella completes radiation and is in remission (we pray), she will be done with treatment. Medulloblastoma is highly sensitive to radiation, so that makes us very hopeful.