Update!

Ellie is one step closer to going home! Today the attending doctor came and removed her chest tube. I had really high hopes for going home today, but they want to monitor her one more night. So tomorrow! I know she and I both are ready to bust down the doors of this place.

Some things we need prayer for right now are for her to be able to keep her meds down. She had a few good days, but this morning she threw up. We are trying to figure out the best way to keep it in her. Pray for wisdom and for her little tummy to tolerate her meds. It’s so tricky to get a little human to take medicine! Also, pray that her chest x-ray looks good tomorrow and we can finally go home and heal!

On the home front, we are still waiting for the contractors to start negotiating with our insurance and for our insurance to put us in a temporary home while ours is repaired. It’s not ideal to bring Ellie home to our house right now, but we sure are ready to sleep in our own beds!

Thank you to everyone who has stood with us. We love you guys!

#eleanorann #mygirl #OMASwarrior #OMAS

After having several different types of scans we have learned that Ellie has something called opsoclonus myoclonus ataxia syndrome or OMAS. This is due to an immune response in her body to a neuroblastoma tumor. She has a small grape sized tumor in between her ribs that her immune system was responding to and instead ending up attacking her nervous system as well. The oncology team believes that this tumor will be easily removed during surgery, where they then can do biopsies and etc. Ellie will have a MIBG scan this week to give us the exact stage of the tumor and if there are any other issues that light up. We are believing this is a low risk, low stage tumor! If this is the case, surgery should be sufficient treatment for the tumor. We are possibly looking at next week for surgery.

However, we will be treating the OMAS for quite some time. The timeframe isn’t entirely clear because that is determined by Ellie’s response to treatment. She will be on steroids and have IVIg treatment monthly at least for the next year. This will help her body’s immune response to start working properly. We are believing for signs wonders and miracles in her little body!

Her oncologist was so impressed we caught everything so early, she said some patients go months before being seen. I am so grateful Olivia noticed Ellie’s eyes were “dancing” which sparked our investigation into what is going on! She has a bit of a road ahead, but we are standing on the goodness of God. He said she would be a child of revival and we believe it!

Please pray for her upcoming scans to confirm what her doctor believes and this is removed easily with no further treatment for neuroblastoma. Pray that her body would handle the IVIg infusions well with minimal side effects. Pray for her sisters, they don’t understand why sister is sick.

And lastly, pray for our house.

When we came home from South Carolina, in the midst of dealing with everything with Ellie, our house has had 4 major plumbing leaks. Those have been fixed, however there was significant water damage. Our homeowners insurance has started the process to get things fixed, but there have been dropped balls all over the place. Jonathan, the girls and our dogs are currently living in a house that is partially demoed inside and without use of a kitchen. Our insurance is supposed to put us in an Airbnb until our home is complete, but the project manager hasn’t even visited to give us a timeline on restoration. Without that, we can’t book a temporary place to live and with everything going on with Ellie, it’s just not safe. We need them to resolve this ASAP!

Thank you again to everyone who has read all of this and has stood with us in prayer. We are thankful to have such a beautiful support system. If you reach out and I don’t respond right away, I’m sorry. There is a lot to navigate at the moment!