We want to thank everyone for all the love, prayers and support you have given, and continue to give, our family through this difficult journey. We are truly blessed by the wonderful people around us. The outpouring of support is so overwhelming we have decided to start this site to provide updates for everyone as they come. Having all of it in once place gives us confidence that all of our loved ones and supporters will get every update and nobody will get missed. Please feel to free to post any questions you might have in the comments or well wishes sections, we would love to read them to Ella! You are welcome to share this page with anybody you would like, we don't want limit love for Ella in any way. Again, thank you all so much for your support, it means the world to us and to Ella. We know with your love and support and the hand of God we will get through this!
Here is the detailed account when things first started happening with Ella:
Back in February, Ella got the flu. She was put on Tamiflu and recovered as expected. A few weeks later, she was complaining of leg and hip pain. We thought it was the typical growing pains- that many 2 year olds experience. Over the next several weeks, she started experiencing more and more pain. She soon started having collapsing episodes, where she would just be walking or standing and she would just fall straight down. Immediately after, she would cry in pain and it was very difficult to soothe her. She never lost consciousness and she never favored one side. These happened more frequently and at this point we took her in to her pediatrician.
The pediatrician saw weakness in her gait and she responded in pain when he did his physical examination. He got an x-ray of her hips and did a complete blood panel. Some of the blood work came back abnormal (creatinine was low, creatine kinase was high, etc). Her x-ray was clear. Her pediatrician sent her to an orthopedic surgeon to ensure that we weren't dealing with something structural.
He examined Ella and declared that although he could see some weakness he was not very worried. He did look at her X-rays the pediatrician took and saw some spots on her bones that he wanted to keep an eye on and check again in a month for a change. His first thought was that Ella had probably experienced some muscle or joint damage from her flu or could have an autoimmune issue such as RA or Juvenile Polymyositis. He sent us home with orders to keep her on ibuprofen for 2 weeks and then wean her off of it.
She did pretty good at home on the ibuprofen, still not at her previous ability before this all started, however. The first evening we didn't give Ella a dose of ibuprofen was a difficult one; She had a very hard time getting to bed because she was so uncomfortable and woke up multiple times throughout the night. This discomfort continued into the next day, so we took her to see the orthopedic specialist again.
She put on a brave face for him, but he was able to see that she was in pain and that this is clearly not something that will go away on its own. Another x-ray showed no change in the spots on her bones and did not reveal any new information (they may have been a little brighter though).
Based on her continued symptoms and relatively normal blood-work, the doctor’s chief concerns were that she could have tumors in her hip bones. The primary conditions he was focused on were osteosarcoma and neuroblastoma. He was mainly concerned for osteosarcoma because it is typical for patients to do well on ibuprofen and then have severe pain when they come off it. After lengthy discussion with our doctor we decided to schedule an MRI of her hips.
Ways To Help! The generous help we have already received has been incredible, yet many of you are asking for more ways to help (besides jumping on the meal train) and we could not be more thankful!
1. Prayers - of course nobody can help more than God, please continue to keep Ella in your prayers.
2. Your support- please write well wishes and comments- there are times when the wonderful messages from you have kept us going.
3. If you have something you would like to reach out to us privately about you are welcome to email us at firstname.lastname@example.org
4. If you are wanting to do a gift there are a couple options; There is of course no obligation, we really have just added this section by request!
- You can send e-gift cards to the email above (for travel expenses- gas, food, etc) - Audible gift cards/credits- Ella loves listening to audio books before bed and this helps her get to sleep quickly! Also we love to play them when we are in the car driving across DFW. - Play packages for Ella- things for her to do while waiting a very long time on a hospital bed- She loves animal figurines, coloring, puzzles, books, etc. Also I am open to new ideas for entertainment. She loves Frozen, Musicals, and Flamingos. - By request, since medical bills, medications, and testing can be expensive, these forms of payment (listed out for your personal preference) all link to a separate bank account that we have set up for Ella's expenses throughout this unforeseeable journey.