May 27, 2015

Update from Joe regarding Ella’s next steps!

Dr. Ginn has decided that the best protocol for Ella is topotecan and cyclophosphamide. We will go to clinic Monday-Wednesday for 4-hour infusions of topotecan. We will be able to return home each of those days. On Thursday, we will be admitted for topotecan and cyclophosphamide on Thursday and Friday. 

Cyclophosphamide (or Cytoxan) can cause something called hemorrhagic cystitis (bleeding of the bladder) so Ella will receive a “rescue” drug called Mesna to protect her bladder. The nursing staff will be putting cotton balls in Ella’s diaper to check for blood in her urine. Ella received Cytoxan during her first 3 rounds and did just fine. 

She will also receive IV hydration in the hospital in order to protect her kidneys. We will hopefully be discharged by Saturday. A 3 day admission isn’t terrible. The hopes are to do chemo every 28 days, but only Ella will dictate how that goes. Ella’s bone marrow has received quite a hit during these last rounds of chemo and she may take longer to recover her blood counts with each round. 

Dr. Ginn weighed a few options when making this decision. Another protocol would expose her to a chemo that she had during the previous rounds, but that could take her hearing. Dr. Ginn said that we will see how she does and we could always adjust her doses of chemo or even switch protocols if we need to. Ella also has 3 more bags of stem cells frozen at University of Kansas Hospital and we could give her back her stem cells if her blood counts don’t recover like we want them to. 

So, this sucks really bad, but we have some options. The goal is to keep Ella healthy and get her to radiation after her 3rd birthday. Dr. Ginn will be forwarding Ella’s medical records to St. Louis in preparation for radiation. We need to get the ball rolling so that everything is in place when we need to advance to radiation. 

Ella has crushed cancer once before and she can continue to do it. She is so strong and will grow to be a healthy, happy adult! Cancer really doesn’t know who it’s messed with!!!

   
   

May 26, 2015

Ella is scheduled to get her port placed tomorrow morning. No word yet on when she will be admitted for chemo, but we might find that out later today. 

Once Ella can receive radiation, she will most likely get proton beam radiation. This will center the radiation more on her spine and limit exposure to her internal organs. She will probably get radiation every day, Monday through Friday, for six weeks. There are only about 14 centers nationwide that offer the proton radiation, and the closest just happens to be in St Louis. 

Ella got to spend the weekend with her cousins from Michigan. It took her a little bit to warm up to them, but once she did, she had a blast. 

If you would like to support Ella and co. as they enter round two of crushing cancer, please consider making a donation here and sharing the page with your friends: http://www.gofundme.com/c0tcr0

   
     

   
     

   
 

May 22, 2015

We are very sad to report the results of Ella’s MRI, which shows that she has had what is called a metastatic relapse. There are multiple spots in her brain and on her spine. 

Ella will have another line placed next week, and chemo will begin in early June. She’ll continue the chemo until she is three years old — when she is allowed to get radiation. She will turn three this October. 

Ella is so full of energy and life, and we know she can beat this again. Please keep her, Sarah, and Joe in your thoughts and prayers. I’ll post again and soon as we know more. 

We love you Ella! You got this. #crushcancerx2

   
   

May 15, 2015

Ella’s next scan, which will determine if she is still cancer-free, will be next Friday, May 22. Please keep her in your thoughts and prayers. This is another big milestone for her!

We will post her scan results here. Until then, enjoy an update in photos below! She’s been having a ball playing and running around at home. (And check out the adorable hair!)