So many people have been asking since my last post about a week ago what the status is on Ellie’s Chemo Study. Ellie was accepted into the study so we were able to begin last Wednesday her first chemo treatment of 1,460 treatments over the next two years. Everything went really well and so far she is handling the chemo like a champ. Only complaint is that she is really tired. The nurses and doctors did warn us that it will take a week or two before any side effects appear. The way the protocol works is that we give Ellie Chemotherapy twice a day at home 12 hours apart. We then go down to the hospital at least once a month. The hardest part of this chemo is Ellie is not aloud to eat two hours before her dose and one hour after her dose. This makes the morning before school a little rough. If you know Ellie she is a very slow eater and needs to eat often or she gets cranky. Ellie did have a complete melt down yesterday because she was hungry. I think it’s going to take some time to get use to the eating schedule. We either are eating supper early for us or supper late in the evening.
Another question that has come up is about the study and the fees. Sadly we don’t get paid to do the study. The nice thing is that the medication is covered under the study. But they do not cover the tests and the processing of the medication. But any savings we will take it. We are just grateful Ellie was one of the seven chosen in this hospital to participate. We feel this is the best medication at the time for Ellie’s life. So we are moving forward and not looking back. Fingers crossed that this works and buys Ellie more time. At some point we are going to have to do radiation but we are buying time hoping we can hold off until most of her brain is developed. What many people don’t think of unless you are going through this type of cancer is that radiation can cause brain damage and many more problems. So the doctors will only do this as a last resort type treatment.
Lastly many people want to know what is going on at our house. Well the back of our house had a room that spanned the entire house that was not safe. Without going into detail the walls started to cave in. There were other dangerous elements that made it not only dangerous for us to live there but dangerous for Ellie’s Health. So we had to get a loan and take down the back half and rebuild. We luckily have great friends that are contractors who did everything in there power to get bids down. They have been going above and beyond. There have been many bumps along the way that have cost more but we have no chose but to move forward. Ellie is so looking forward to being back in our house. We had to move completely out during this process for not only Ellie’s Health but also Dave and Jake’s asthma couldn’t handle the dust. We are hoping to be back in soon. Ellie really wants to get back in her room. The nice thing is that we are living with my sisters, which is less then a mile away so we are constantly at the job site being able to see the changes on a day-to-day basis. Fingers crossed we pass our inspection on Monday and we can move forward finally.
So yep nothing but drama for the Cuiching but I must say I really think we do handle these difficult times as a family like no other. We have an amazing support system that helps us through all these ups and downs. Without the support and love from friends, family, and our community it would be much more of a struggle. Thank you so much for your love. We wish you and your families a fantastic and blessed Easter.
A mother with a battle ahead of her.