Yesterday Ellie was given a shopping spree at Best Buy by the Make A Wish Foundation! They sent her a generous gift card as well as a gift card to a restaurant. We kept Ellie in a mask and stroller in the store, but she had a blast picking out wonderful electronics, movies and games. The store also gave Ellie some special gifts! We then went to the restaurant, where we were able to get a table in a little alcove away from the general public. Ellie even spent a good amount of that time in the stroller. At the end of the night, she said "this is the most fun I've had since my birthday!"
Despite our best efforts, Ellie did pay for the energy expenditure and excitement. She had a difficult night and a day spent lying down. Her pain has been worse today, but if you ask Ellie, I'm sure that she would tell you that it was worth it! Now she can just hunker down and enjoy her new toys. :-)
Thank you all for your sweet comments and emails! I'm glad you enjoyed the pictures. I wish I had done better putting them out sooner - thanks for your patience.
As always, thank you for your continued love and prayers! They mean more to us than we can express. Thank you for sticking with us through the days with no news. Sometimes it feels like we are in a time warp - days go by so quickly even when it doesn't seem like we have done anything at all. The remedies have been working in an almost miraculous way, but it takes a lot of time and energy on Loretta's part to study and pick the right ones. Melanie has been great to have here to administer medication and access Ellie's port to give fluids. I wish that I could give you a sense of what the days are like... so much time is spent discussing each and every move that we make - medicine, nutrition, homeopathy. When an unexpected variable comes up, we talk some more - hashing out all possibilities. Most days I feel exhausted when I'm doing absolutely nothing - even when I get a full night's sleep. I have more help than I could possibly even wish for (I don't even have to cook, as Reni takes care of that!) but I still seem to wake up tired and go to bed just as tired. Both kids are kind of clingy in different ways right now (understandably so). Loretta keeps Ellie at night, which works out well for all of the remedy dosing, but I always snuggle with Ellie before she falls asleep. Unfortunately Ellie doesn't go to sleep until midnight or 1:00 a.m., and Ethan wakes up around 7. John's work schedule is working out wonderfully! He works from 6:00 a.m. to 6:30 p.m. on Friday, Saturday, and Sunday - and then has four days off! We love that. It has been wonderful to have him around so much. His days off go fast, but his work days go by even quicker!
For those who are reading this tonight, please pray that Ellie can sleep well with little pain. Also, as you pray for all of us, please lift up Loretta specifically. She lost pretty much a whole night's sleep last night. Another specific request is for all of us to remain healthy. We have heard that there is a bad flu bug in the valley right now. Having to quarantine any of us (particularly John, Loretta or myself) would be difficult and heartbreaking in the extreme. I guess it may sound a little odd to be so concerned about sickness now that this seems to be the end for Ellie, but we are clinging to each and every day that we have with her. And then there is that ever so tiny little ray of hope that we still carry in our hearts. I suppose that it doesn't make any rational sense... but as long as Ellie is alive, we can't help but live with that barely discernible hope. Which is why we wake up every day and do the same things that we have been doing all along to bolster her immune system and fight this cancer. All we know what to do is to keep fighting, even while we let go. I know, it really doesn't make any sense... but then somehow, it does.
As always, through the fog of exhaustion and raging emotions, the grace of God is always present... and always enough.